Dr. Kerry R. Bunn, Sr.

PLEX and Vision Update

2012-02-08T16:31:00.002-05:00

It has been a little over a week since I completed the five-day PLEX. It has helped my walking, strength, and stamina. I see little, if any, effect in my breathing and vision.

I have a new video where I discuss and demonstrate my walking and strength before and after PLEX. It documents just how much PLEX help.

You can view the video at

http://www.youtube.com/watch?v=DW58SWrOjq4

My ophthalmologist did a thorough eye exam and vision field testing. He saw nothing on any tests to cause any concern and that my eyes looked good. My vision problems may be "silent migraines"

The Crud--Updated 02/07/12

2012-02-07T13:41:00.000-05:00

After five days of outpatienttreatments, over an hour sitting in a waiting room for my ultrasound,and two sick grandchildren ...I now officially have the crud.

I went to the Minute-Clinic anddiscovered after an hour of waiting, they cannot treat me becauseI am on chemotherapy. So I went to the Erlanger Urgent Care Center.

They prescribed antibiotics and coughmedicine. I think I have caught the bronchitis in time.

Update: I am feeling better and the crud did not get too bad. Antibiotics worked!
Chemo is over for now and I am doing well with very few side-effects. Soli Deo Gloria.

PS: Ophthalmologist appointment today to check for my sudden vision loss.

Four Days after Outpatient Plasma Exchange at Erlanger

2012-02-01T07:49:00.001-05:00

The Plasma Exchange (PLEX) is over andthe jugular vas-cath is out!

A large two-port dialysis type vas-cathis inserted into the jugular vein and threaded down to near theheart-lung junction. It is then stitched in place for the durationof the procedure. One port on the vas-cath is for input and theother is for outtake.

Each plasma exchance procedure involves(1) pulling all the blood from my body, (2) separating the bloodcells from the liquid, (3) throwing away the old liquid, (4)recombining my blood cells with new albumin, and then (5) pumping itback into my body. The entire process happens continuously andinvolves about 7 1/2 liters of blood. On the newer, faster machinesthe procedure takes about three hours. On the older machines, aboutsix hours. This does not count the time it takes to hook me up tothe machine and waiting on the albumin to arrive. It is a full-dayprocess.

The exchange basically pulls everything(including medications) out of my system except blood cells. Thisreally plays havoc with my medication blood levels.

After my first day of nausea, theypre-medicated me. I was given Tylenol by mouth, Benadryl andPhenergan directly into the vas-cath--what a rush. About half-waythrough the procedure I was also given Zophran and calcium as needed. It really helped!

Needless to say, that much "fluidshift" and medication puts one's body into shock. It takes meseveral days to recover. I have now had a total of twenty-seven PLEXtreatments.

I had two really strange occurrencesduring this series of treatments.

During the 4th and 5th PLEX, my legsreally jerked. On the 4th day, my left leg started jerking about 30minutes into the procedure and jerked for about 30 minutes. On the5th day, my left leg started jerking again at about 30 minutes and itjerked for about 1 1/2 hours. The RNs had no idea why. It was not acramp. It was a jerk that spasmed and straightened my leg like I hadbeen hit with an electric probe about every minute. This was theworse jerking I have had and was very apparent. I have jerked overthe weekend, but not as bad.

I had a strange experience with my eyeson Wednesday while waiting on PLEX. I had a bright, white, jaggedline develop across my field of vision. In both eyes, even with myeyes closed. Below the line, my vision was wavy--like looking down ahot road in summer. The line/wavy vision slowly rose up and wentaway. The left side of my visual field lost peripheral vision and myleft field vision became dark and I could not distinguish items. TheNephrology docs evaluated me and did not see anything of concern atthe moment, but said to go to the ER if it happens again. The wholeexperience lasted about fifteen minutes. My Vanderbilt neurologisthas scheduled a Carotid Ultrasound and will followup on this issue.

My last chemo is scheduled for February6.

Erlanger PLEX is Over

2012-01-28T19:06:00.001-05:00

Five days of plasma exchange at Erlanger are over. Thanks to everyone in the dialysis unit for their kindness and care. Now it is time to get over the hit-by-a-truck feeling.

I go back Monday for more blood work and then to Interventional Radiology to get the Tunneled Vas Cath pulled.

Quick Update

2012-01-25T06:46:00.001-05:00

Erlanger uses a new PLEX machine that filters (not spins) the blood. It runs much faster and I did very well during much of the procedure. Just before the end, I had nausea out-of-the-blue and threw-up immediately with no warning. Zofran is a wonderful friend and stopped the nausea. I will be Zofraned-Up today! Thanks for the prayers and support.

More Plasma Exchange this Week

2012-01-23T20:15:00.001-05:00

My MG has worsened lately. I talkedwith the neurologist late last week and began the process of approvalfor additional plasma exchange. Everything is ready. I have thevascular catheter inserted in the morning (Tuesday). After that, Ihave five days of plasma exchange at Erlanger in Chattanooga starting tomorrow.

Updated Again -- I Sent the eMail . . .

2012-01-22T18:15:00.000-05:00

It looks like I will have three to five days of plasma exchange (PLEX) somewhere next week.

UPDATE 01/18/12: Waiting for my series of PLEX to be setup in Chattanooga in the next few days.

UPDATE 01/20/12: I will have PLEX at Erlanger next week.

A Question of God's Will

2012-01-17T11:59:00.001-05:00

I am part of several internet supportgroups and my book has a good presence in the MG web community. As aresult, I often receive questions about living with Myasthenia Gravis(MG). One recent question dealt with doing God's will.

An individual was in active ministrywhen MG and other medical issues hit hard. Now their ministry ison-hold. I paraphrase their question as follows. "Why wouldGod give me these talents for ministry and then take away the abilityto use them?" I often wrestle with this question myself.

Here is some of my answer.

I was thinking about your question ofGod's will and your life. I could list all types of theologicaltheorems, but sometimes theory does not really answer how we feel!

I thought of Biblical characters likeAbraham, Joseph, Daniel, Paul, etc. They, unlike many others, had avery clear and directly personal, spoken word by God to them. Theyknew His will clearly!

Like so many others, we have not hadGod speak directly to us through a burning bush--but then we haveheard through the Holy Spirit. We know what to do as believersthrough the indwelling Spirit. And honestly, from reading yourstory, it does not seem you had much problem doing His will.

The "Rub" comes when whathappens to us does not match what we perceive His will to be, or inour case, the gifts, talents, callings, etc., now seem to be (forlack of a better word) useless.

It is OK to ask why! Maybe thestruggle we face now in regards to God's will is not so much "why,"as it is "what's next?" We shall see! And is not that theimportant part of faith and doing His will? For we walk by faith, notsight.

Quick Medical Update

My walking became more difficult thisweekend. It feels like my legs do not want to move at the hip joint. They hurt and feel really weak. My breathing is no better either.

It may be time for another plasmaexchange. I guess I need to contact my neurologist and set one up,but I just do not like have my jugular vein cut open again.

A Few Stats

2012-01-16T09:58:00.001-05:00

Here are some stats since I started blogging on April 24, 2009.

Page views: 17,234

Reader from the following countries:
United States--13,676
Germany--457
Russia--297
United Kingdom--254
Canada--201
Australia--153
South Korea--147
Netherlands--138
Ukraine--103
Latvia--101

The most popular blog post is "New Video on the Effects of Medication" on July 18, 2010.

My videos on YouTube have been viewed 7,937 times and I have 23 video subscribers.

Thanks for all the support.

A Quick Medical Update

2012-01-15T11:34:00.002-05:00

At my last neurological appointment,Dr. CL ordered blood work and found my blood ferritin level was verylow. This was probably contributing to my trembling, restless-leg,and aching. He prescribed ferrous sulfate tablets are they arehelping the restless-leg and aching somewhat. The tablets nauseateme, so I take them every other day. I can tolerate them this way. This is good.

In a later email, he suggested using myBi-Pap during the day to help my thinking. I could be retaining toomuch CO2 in my system which would cause my daytime confusion; usingthe Bi-Pap should lower the CO2 level. I have been using the Bi-Papduring the day and it seems to help. Cathy mentioned this morningshe thinks it is helping too. My thinking is still not where it was,but is better. This is good.

Overall, I am better from therestless-leg, cloudy thinking, and Zombification than I was in earlyDecember, but my breathing and vision are no better. My breathing mybe worsening slightly. I could probably use another plasma exchange,but would rather wait and not pull any Cytoxan out of my body rightnow. This is not so good.

My next Cytoxan infusion is lateJanuary. So far, so good.

Thanks again for all the prayers andsupport.

Why I Blog

2012-01-10T09:42:00.001-05:00

I wrote my first blog entry in April2009. Since many new people have joined and read my blog now, Ithought it would be good to restate why I write this blog.

So many things happened to me soquickly in early 2009 it became impossible to keep all of thoseevents in memory. I began by keeping a diary of events andmedical records to codify my experiences and treatments. Thatdiary grew into this blog and my first book.

I discovered that physicians do nothave all-the-answers so many of us with serious medical conditionsseek. I want physicians to hear from a patient's daily experiencewhat living with autoimmune disorders is like. My neurologist,several medical students, other physicians, and my insurance companycase manager read my blog and watch my videos. I truly hope it helpsthem understand and diagnose patients more affectively andeffectively.

For thirty-five plus years of ministry,I offered advice and council to those experiencing tragedy andsickness themselves or in the family. Now, like Ezekiel, I sit wherethey sit. Were the words I offered to those individuals good for menow? I believe so! If there is anything to this "faith"that I have preached, it would surely sustain me now. It has and itwill. I want people to know there is a reality to faith to helpus live "a life well lived," even in the face of seriousillness. If we are truly more than physical creatures—which Ifully believe we are—then the spiritual component of life affectsevery fiber of our being and all that we encounter.

I decided to be open and honest aboutall I was experiencing physically, spiritually, and emotionally—eventhe questions I have. Sharing so openly is still difficult for me. But I do so in hope my experiences and insights will help otherswho are going through similar and trying circumstances.

Please feel free to contact me if youhave any questions or comments.

Out-of-Work for One Year

2012-01-06T11:09:00.002-05:00

Yesterday, January 5, 2012 was theone-year anniversary of my last day of work. It has been a hugechange and transitioning from work to disabled is difficult at best. Trust me, doing nothing for a year is not all that fun and I wouldmuch rather be working. Dropping from a full-time salary to a 60%disability income takes a lot of adjustment. My disability insurancecompany worked to get my Social Security disability started. The badthing is my disability insurance reduced my disability payments bythe amount Social Security pays. The good thing is that I qualifyfor Medicare in July 2013, if it is still around. We had a largefinancial loss on the property we owned in Monticello, but the Lordhas been good to us and has provided for our needs. Soli Deo Gloria!

It is very frustrating not being ableto do...practically anything. Two things help make that fact a littlemore bearable. First, I am not and never have been a stressed ordepressed person. Second, I just don't feel like doing anything mostof the time.

To be totally honest, my conditionreally frustrates me at times when I go to church. This is nothingagainst Jim or the staff--Jim is doing an excellent job. It is feltfrustration that, "I should be me up there preaching, I shouldbe up there leading the church, I should up there in charge, but Icannot because of this terrible disease!" OK, I'm human, veryhuman. I acknowledge my feelings and am dealing with them. I knowthe Lord has a plan and purpose in all of this, I just don't knowwhat it is. Until then, we keep moving forward doing what we know todo, trusting God for the future.

Through my book, blog, FaceBook, andother support websites, I have corresponded with numbers ofindividuals from all over the world suffering from Myasthenia Gravis(MG). Each person faces their unique struggle and challenges, butalways against the common enemy of MG. I hope my own journeyprovides strength and encouragement for them as theirs does for me. It is still a journey through sickness and faith for me and I am surelearning a lot along the way.

I have learned to adapt to the pain,tingling, tremors, numbness of the small fiber neuropathy. Theweakness of the Myasthenia Gravis is self-limiting. In other words,it stops you in your tracks whether you want to stop or not. Thebreathing and vision problems still plague me greatly. Not beingable to breath because my lung muscles simply quit working is themost disabling thing of all. Like it or not, I can cope with all ofthese issues.

What I have the most trouble copingwith is known as "emotional liability." As mentioned inprevious posts, I may be developing an additional neurologicalcondition called Pseudobulbar Affect (emotional liability). Insimple terms, it means I have crying spells for no apparent reason. I am not depressed or sad, I just have waves of crying flood me fouror five times a week. This is so not me! Each episode usually lastsfrom a few seconds to a few minutes--but it seems like an eternity. A trial of medication to treat this condition almost put me in thehospital over Christmas because it worsened my MG severely. What Idislike most about the "crying" is feeling totallyout-of-control. On top of all this, "chemo brain fog" hasset in too.

Cathy has been wonderful in taking careof me. She drives everywhere we go. She cuts grass, does the yardand house work (I am thinking about renting her out for chauffeur andlawn care services). She helps with all my medications and makessure that I take care of myself. She can even figure out what I amtrying to say when I can't find the right words to speak because ofthe brain fog. She is there for me and I really appreciate and loveher. Kerrell and the girls have also been a blessing and help a lot.

Since January 2011, my medical expenseshave totaled well over $300,000.00. Thank the Lord for goodinsurance! I have had: 120 grams of IVIG given over eight days ofinfusions, twelve plasma exchanges, numerous pulmonary functiontests, echo cardiograms, sleep studies, EKGs, chest X-rays, a HiResCT scan, multiple visits to several physicians, three days in thehospital, one emergency room visit, five Cytoxan chemotherapyinfusions, and a partridge in a pear tree. I currently take fourteenprescription medications and have one more Cytoxan infusion scheduledin January 2012. At that time, my neurologist and I will decide thenext best option, which looks like another six months ofchemotherapy. My current condition is about the same as reported inmy blog of Thursday, September 8, 2011.

Thanks again for all your prayers,love, encouragement, and support.

From Cathy:

This past year has indeed been a yearfor transition. Hard? Yes. Uncertain? Yes. Scared? Yes. I playthe game of "What If," which is not a good game to play. What if the cars have mechanical problems? What if the couch fallsapart when someone sits down? Who is going to help with the littlethings around the house that I can't fix since Kerry hasn't thestrength to fix? This game of "What If" will certainlydrive you to distraction, headaches, and emotional trauma.

I feel the struggle of Kerry's need tobe up there preaching, chairing meetings, developing programs,working on budgets, directing staff, etc. I feel the displacement ofbeing in a new situation myself. I am no longer the preacher's wifeand do not have the clout I once had (Laugh Out Loud).

With all that has happened this pastyear, I needed to reduce my stress level. So at the end of December,I resigned my position and will look for one not quite so stressful(whatever that may be, LOL). I am concerned about my availability tobe with Kerry if and when he needs me. Several times this past yearI had to leave work early and come home because of medical issues. Ihave been working full-time for a temp agency and will be placedsomewhere again soon, but I may ask for a part-time, or a veryflexible assignment, that will fit with our needs.

I have ready many devotionals bookswhich reinforce my belief that God is in control and He has allowed(not caused) this to happen in our family. Why? Only God knows; itis one of those Kingdom mysteries maybe to be revealed later. Rightnow this is where God has allowed us to be. As I told Kerry, "Wedon't understand this and certainly didn't want it, but as hard as itis on us, we know God has allowed us to go through this and He willsee us through."

Thanks to all of our friends andfamily. Your concern and encouragement means a lot.

--Cathy

Cytoxan Infusion for Myasthenia Gravis, Fifth Infusion Report, December 29, 2011

2011-12-31T11:05:00.001-05:00

My fifth cytoxan infusion was Thursday,December 29. The infusion went very well. The staff at Vanderbilt100 Oaks Medical Infusion Center did an excellent job as always. They are a great group of people and I appreciate them very much. Istarted with the regular side-effects on Friday. Things are not toobad this time. The cytoxan is still helping me hold my own. Noworse, but no better either. That is a victory!

Bethany (12) and Alyssa (7), two of ourgrandchildren, were with us because school was out for the holidays. Since I was not sick after the infusion, we went to see the Christmaslights at Gaylord's Opryland Hotel. We planned to eat at the foodcourt of OpryMills Mall, but the majority of the mall was stillclosed from flooding. We ate at Dave and Busters--first and lasttime. It was just to much noise for us.

If timing is everything, we goofed! The Mississippi State and Wake Forest football teams were arriving atthe hotel to play in the Music City Bowl. Wow! Tons of people andbuses everywhere. We were finally able to get to valet parking atthe lower entrance. I borrowed a wheel-chair from the church since Ihave so much trouble walking. I was able to get my right leg intothe wheel-chair. (Note to self: check size of wheel-chair from nowon!) I would have been better off with a wheel-barrow. I sat in thelobby while Cathy and the girls looked at the lights. They weregood, but not as many as in years past.

What Not to Take!

2011-12-26T21:16:00.001-05:00

After several email conversations withmy neurologist, we decided on a possible treatment plan for myemotional issues. There are two basic treatment options available. One was a medication I had used about a year ago for neuropathy pain. It made me very anxious so we will not use it now. The othermedication is
relatively new and is based on dexamethorphan (plusother ingredients) which is used in cough medicine containing DM. Since it could make my MG worse, we decided to start with the cough medicine and see what happens. If the cough medicine does not bother my Myasthenia Gravis,then on to the prescription medicine.

I began taking the cough medicine in smalldoses on Wednesday morning. By the second dose I began to have alittle less emotional issues, but my breathing was not just right. Iincreased the dose each day noting any changes I felt inmy body.

By Friday, I was taking the full dose--and my MG hit with avengeance. Thirty minutes after taking the cough medicine my breathing worsened so much that I needed to use my bi-papmachine. Thirty minutes after that, my vision became very blurry andmy eyes hurt. A few hours later my voice became really distorted andsounded like it did in my YouTube video(http://www.youtube.com/user/drbunn?feature=mhum#p/u/6/N4qK_O4Eyc4). I have not taken any more medication.

My voice problem continued untilChristmas morning. My breathing and vision issues are still bad. Ihope they will settle-down over time.

Merry Christmas

2011-12-24T13:59:00.002-05:00

Cathy and I wish each of you a very

~~ Merry Christmas ~~

Thanks so much for

your prayers, support,

and encouragement.

We Love You All

Blue Christmas--Hopefully Not!

2011-12-19T10:32:00.001-05:00

I have been dealing with issues ofcrying lately. This is so not me! My neurologists say there is acondition people with ALS, MS, stroke, and other neurological issues may develop which leads to crying or laughing for shortperiods of time for no reason. This may be happening to me now.

Over the last several weeks, waves ofemotion have hit me out-of-the-blue. I do not feel sad or worried,but my eyes weep and I suddenly feel overwhelmed with the need tocry. Usually it only lasts for a for minutes.

My Effexor was increased to 225mg perday to see if it helps this condition. Effexor is a stronganitdepressant, but is also used to treat nerve pain. The nerve painis why I take Effexor. After a few days of increased Effexor, Ibecame zombie like and just don't care about anything. Last Fridaymorning I passed out and almost passed out again on Saturday.

Right now I have gone back to 150mg ofEffexor per day to see if I can un-zombify. We emailed the doctorthis morning and are waiting for a response about the medication.

My next cytoxan infusion is December29. Cathy will drive me and the girls will be with us since they areout of school. If I am not nauseated, we plan to ride over toOpryland Hotel to see the Christmas decorations after the infusion.

I will be fine!

December 15, 2011 Update

2011-12-15T11:08:00.001-05:00

I had two doctor appointments thisweek. The sleep doctor said my Bi-Pap seems to be working well atnight. That's good, but it is still hard to breath. Myophthalmologist said my vision has worsened (not surprised). Icannot legally drive without glasses! My neurologist wants me towear an eye-patch to compensate for double-vision when I drive. Ilook like a pirate! Neither doctor wants me to drive much. Cathy ismaking a great chauffeur. The good news about my eyes is they showno damage from the high-dose prednisone I take daily.

I have been very tired this week. Cathy and I attended to Christmas parties last week. I was not ableto stay for the entire first party. Last Sunday, we met Randell andhis family in Gadsden AL to give the kids their Christmas presents. We will not get to see them on Christmas. On Tuesday, we hadBethany's band concert. It was really good.

All of this has exhausted me greatlyand my muscles are not wanting to work correctly. I have overdoneit! I did absolutely nothing yesterday and will focus on restingtoday.

Cytoxan Infusion for Myasthenia Gravis, Fourth Infusion Report, December 2, 2011

2011-12-06T11:06:00.001-05:00

The cytoxan infusion itself went very will with no side-effects on Friday, December 2. I still had a couple of "bad" days on Sunday and Monday of the following week, but nothing too bad.

Let me update my current condition after four cytoxan infusions. Things have not changed much, except the progression of disease has slowed. Slowing the progress is great improvement for me! Remember, I have Myasthenia Gravis and whole-body Small Fiber Neuropathy.; Condition as of November 29, 2011

Breathing: This continues to be a major problem and is debilitating.

Mental Issues: I am occasionally having trouble choosing the right words to say or selecting the correct word for objects. I also am not "sharp" in my thinking right now. I have become very emotional at times--this is not normal for me.

Vision: My vision is still worsening. If I look straight ahead, my vision is basically OK. If I shift my eyes in any direction, I have double vision. Moving object blur easily. I do not drive much at all now. Vision disturbance and eye pain are a constant issue.

Muscle Jerking: I have lots of involuntary movement in my arms and legs. They jerk on their own at times. I have a lot more leg cramps than ever. My sleep doctor diagnosed Periodic Limb Movement Disorder. This has really increased over the last several weeks. This is becoming a very bothersome issue for me.

Tingling: More tingling and numbness over almost my entire body.Major pain area is in my knees to feet on both legs and forearms tohands on both arms. I have had sharp, burning, electrical pain inthe outside of my right thigh. Pain is excruciating.

Tremors: Tremors seem to be increasingin my arms and legs.

Aching: My total pain level isincreasing, both burning and aching.

Needle Pricks: I still do not feel needle pricks over almost my entire body.: Sensory Issues: I do not feel hot or cold immediately. I can burn myself easily. There are areas on my body where I do not feel light sensations such as "blowing on my skin."

Exhaustion: I am not as exhausted from Chemo as I was from PLEX. Any activity quickly exhausts me because of breathing issues.

Weakness: My strength quickly fades with use.

Walking and Balance: I can walk short distances, slowly. My balanceis off occasionally. My legs feel heavy.

Autonomic Nerves: I still have varied BP, pulse, etc.

Hypohidrosis: I have greatly reduced sweating and basically only sweat on my forehead. I may have develop some very light sweating under my arms, but it is difficult to tell for sure. I feel like I might be sweating at times, but moisture is not present.

Body Temperature Regulation: I can overheat if I am not careful.Strangely enough, I still feel cold but the cold does not reallybother me. I do not think my body is registering the coldtemperatures properly.

Photo-sensitivity: Sunlight, or bright spot-lights, make my face feel like it has been sunburned. I avoid sunlight.

Orthostatic Hypotension: I still occasionally get dizzy whenstanding.

Tenth Cranial Nerve Palsy: I was diagnosed around 2005 with a partial CN10 palsy that effects my throat and gag reflex somewhat. I do not feel hot or cold on the interior left of my throat when I swallow. I have not had any trouble swallowing, but I do not feel the temperatures.

Voice: My voice still gives problems with extended use.

Jaw/Temple Pain: My jaw muscles hurt when I eat anything hard. I notice it most in the morning when I have not had my Mestinon. The more I chew, the more I hurt. Swallowing liquids is becoming difficult at times.

Whole Body Involvement: My entire body is effected.

Neurology Appointment, November 29, 2011

2011-12-02T07:31:00.001-05:00

It was about this time last year thatCathy, myself, and my neurologist made the decision to take medicalleave from the church in January of 2011. That medical leave wouldend with my resignation in June 2011 for health reasons. It was theright decision!

Since January my health has continuedto decline even with various aggressive treatments, includingchemotherapy. We met again with the neurologist on November 29 andit seems the disease progression has slowed. He had hoped thetreatments would have made improvement in my current condition, butwas glad the treatments had "kept me out of the ICU and off aventilator." I am grateful for that too!

The High Resolution CT of my lungs and abdomen came back normal. No signs of problems except for a "fat liver." That goes along with the rest of my body! The negative CT confirms that my breathing problems are directly related to my Myasthenia Gravis and Small Fiber Neuropathy. So, I will continue with immune system suppression treatments.

At present, the sixmonths of chemotherapy will probably be extended to one year. I willkeep you posted.

PS: Going for my fourth cytoxan infusion today!

Thanksgiving -- CT Scan Update

2011-11-23T08:58:00.001-05:00

I must admit there are times I do not "feel" thankful! But thankfulness should never be the result of feeling, situation, or emotion. Thankfulness is the result of an eye-opening realization that, in-spite of everything, I am truly blessed. I am blessed and thankful for everything! Happy Thanksgiving Everyone!

CT Scan Update
The report is back from last weeks CT. The radiologist saw nothing of significance on the scan. This is good. The Pulmonologist will review the CT before my appoint with the Neurologist next week. So far, things still indicate my breathing problems is with my muscles not my lungs. Thanks for the prayers and support.

High Definition CT Scan

2011-11-19T11:01:00.001-05:00

I had a High Definition CT Scan of mylungs and abdomen yesterday (11-18-11) with contrast at Vanderbiltyesterday. I am allergic to contrast, so they pre-medicated me andeverything went well. They are still looking for the cause ofmy breathing issues. The report should be ready early next week.

Cytoxan Infusion for Myasthenia Gravis, Third Infusion Report, November 4, 2011

2011-11-08T15:33:00.001-05:00

The infusion itself went very will with no side-effects on Friday, November 4. I did not feel very well on Saturday orSunday--almost flu like. Yesterday was a bad day too. I becamenauseated in the afternoon and called Cathy home from work. I hadchills last night. It seems the chemo side-effects finally caught upwith me at last. I am doing better today but still have lots ofcramping. I think my breathing and vision may be getting worse. Ihope that is just a "fig newton" of my imagination.

November Update

2011-11-03T08:24:00.001-04:00

I will have my third Cytoxan infusionthis Friday, November 4, 2011. This is eight weeks into my sixmonths of treatments. The Cytoxan is still less stressful on my bodythan either IVIG or PLEX and I have had no bad side-effects. SoliDeo Gloria!

My Myasthenia Gravis is no worse but nobetter than when I started the treatments. This is good because I amnot worse. Breathing and vision are still real problems for me.

My Small Fiber Neuropathy is stillworsening and hurts a lot. I am numb, tingle, burn, and ache all atthe same time!

The good news is Social Securityapproved me for disability this week after only six months and onedenial.

Thanks again for all the prayers andsupport. More later!

Pulmonology Update, October 12, 2011

2011-10-13T09:06:00.001-04:00

I emailed my neurologist at Vanderbilton Tuesday about possibly doing another pulmonary workup atVanderbilt because of my continued breathing difficulties. I have agood local pulmonologist, but there is value in having all tests anddoctors at the same facility. He agreed. I contacted thePulmonology department and they were able to see me yesterday(Wednesday, October 12, 2011).

My appointment was at 8:20 AM Nashvilletime. We (Cathy and myself) left at 5:15 AM (Georgia time) becauseof the heavy fog and possibility of heavy traffic. The fog was not aproblem until we crossed Monteagle. We arrived in Nashville about6:30 AM (Nashville time) and ate breakfast at the Pancake Pantry. Wemade it home about 6:30 PM (Georgia time).

I had a good and thorough exam and thedoctor(s) took lots of time to ask questions, listen to me and mywife, and explained what he thought was happening. They were able towork me in for lots of tests while I was there--and I do mean lots oftesting.

The Results!

(1) There is no evidence of lungdisease! My lungs are clear. No sign of cancer, COPD, etc. This isgood news and helps clarify what is happening to me.

(2) The values of the PulmonaryFunction Testing were worse than they were in November and Decemberof 2010 when first tested at Vanderbilt. Even taking into accountall of the treatments I have had since then, my condition continuesto slowly decline.

(3) My diaphragm continues to be atabout 40% of normal strength. This is why my breathing is sodifficult. My respiratory muscles are not working correctly makinginhaling and exhaling hard. My inhaling is better than my exhaling. According to my test result, I have less exhale force than an 80 yearold woman. So, its harder to get the old air out to get the new airin. To compensate for the poorer air exchange, I breathe very hardand my pulse rate goes between 120 to 150.

(4) My main diagnoses consists of twoconditions: Myasthenia Gravis, Small Fiber Neuropathy. Each ofthese can cause breathing issues and effect the respiratory musclesin different ways. My breathing problem could be caused by either orboth.

What's Next?

I continue the Cytoxan infusions inorder to lower my immune system. Since both my Myasthenia Gravis andSmall Fiber Neuropathy are autoimmune related, lowering my immunesystem should reduce the symptoms and allow time for my body to heal. The amount of healing depends on the amount of damage.

I meet with my neurologist in Novemberand we plan to discuss some nerve studies on my respiratory muscles.

Right now I am not in immediate dangeror respiratory distress (except for a serious infection). The primaryfocus is stopping the progression of these diseases. The secondaryfocus is "what will we do if we can't stop the progress?"We shall see. Until then, I am learning to live with limitations.

Cytoxan Infusion for Myasthenia Gravis, Second Infusion Report, October 7, 2011

2011-10-09T11:55:00.001-04:00

I have completed my second IV Cytoxaninfusion for Myasthenia Gravis at Vanderbilt's 100 Oaks MedicalInfusion Center. We arrived around 11:00 AM for my noon appointmentand checked in early.

The treatment procedure was the same aslast time. First, I had blood work and an urinalysis. Second, I waspremedicated with Tylenol, Benadryl, Zofran. and then hydrated with anormal sodium IV solution for about thirty minutes. Third, I receivedone gram of Cytoxan through a one-hour IV drip along with moresaline. Finally, after about thirty minutes of more hydration I wasreleased to go home.

I have had no bad effects from theCytoxan. My condition is about the same as it was before I began thechemotherapy.

Thanks again for the prayers andsupport

The Pain, The Pain!

2011-10-04T09:45:00.002-04:00

Last Wednesday I woke up with extremepain in my left big toe. I could not walk on my foot because my toehurt so much. So, I called the podiatrist and went to see him afterlunch. He suggested cutting off part of my toenail that may beingrown. "No problem, let's do it."

I am insensitive to "sharp"pain. I do not feel needles, cuts, etc. I have had needle biopsies,arterial blood gas draws, two-hour EMG test all with no pain. Evenlidocaine does not burn me. But did I have a surprise in store!

The doctor did a nerve block on my toewith lots of lidocaine. No pain, no burning, no problem. He beganto cut my toenail . . . wait . . . it hurts. By his third clip, Iwas almost screaming. He could not believe I was feelingpain--neither could I. He gave me more lidocaine and proceeded tocut and remove the "ingrown" part of my toenail. It H U RT and I cringed (actually I hollered)! Even with tons of lidocane, he could not stop thepain and it was one of the worst pains I have ever had in my life. They heard me groaning and moaning all the way to the waitingroom. I know because they all stared at me when I left the office. As soon as it was over, the pain stopped and my toe has not hurtsince.

What happened? After some research, Idiscovered that, in some cases, lidocane does not work when one'snerves are in a hyperactive mode. At times, the top of me feet andtoes are super-sensitive. This must have been one of those times.

A Quick Update

My respiratory infection is better. Mynext Cytoxan infusion in this Friday.

Quick Update for 09/19/2011

2011-09-21T08:16:00.002-04:00

I am still doingwell from the Cytoxan, but now I have a respiratory infection. I amon antibiotics so I should be fine.

Update for September 12, 2011

2011-09-12T08:34:00.001-04:00

So far the IV Cytoxan for my MG has been less of a problem than IVIG or PLEX. I hope it continues that way.

Cytoxan Infusion for Myasthenia Gravis, First Infusion Report, September 9, 2011

2011-09-10T15:25:00.001-04:00

I have completed my first IV Cytoxaninfusion for Myasthenia Gravis at Vanderbilt's 100 Oaks MedicalInfusion Center. We arrived around 12:30 PM for my 2:00 PMappointment and checked in early. Things went very well.

The treatment procedure will be thesame every time. First, I have blood work and an urinalysis. If allresults are in allowance, they proceed with the infusion. Second, Iam premedicated with Tylenol, Benadryl, and Zofran. I am thenhydrated with a normal sodium IV solution for about thirty minutes. Third, I receive one gram of Cytoxan through a one-hour IV drip alongwith more saline. Finally, after about thirty minutes of morehydration I am released to go home.

I have had no bad effects from theCytoxan. I have drank and drank and drank lots of water yesterdayand today. The nurses suggested I take my Promethazine every sixhours for the next few days to keep down nausea. It seems anyside-effects from Cytoxan are not immediate; they come a day or solater. So far, so good!

Now we wait for the next infusion andsigns of improvement. More to follow later!

Thanks again for the prayers andsupport

Cytoxan Infusion for Myasthenia Gravis, Pre-Infusion Report, September 8, 2011

2011-09-08T16:20:00.000-04:00

Tomorrow (September 9, 2011), I startmy first IV Cytoxan infusion for Myasthenia Gravis. After anextensive internet search, I have not found much information aboutthis procedure and its effectiveness for MG. So I will be bloggingand videoing about my experience. I hope my experience helps otherswho may be facing more aggressive treatments for their MG.

I will have one regular Cytoxaninfusion every four weeks for the next six months. The goal oftreatment is to lower my immune system even more without totallydestroying it. I am not having high-dose Cytoxan (a.k.a. HiCy) whichablates one's immune system. Be sure to read the September 1, 2011blog post for the reason I am taking Cytoxan.

None of my previous treatments hasstopped the progression of my Myasthenia Gravis and Small FiberNeuropathy. Cathy and I hope this will.

My current symptoms are slowly worsening, with special attention to the following issues.

(1) Breathing continues to be a major problem. I am now on a Bi-Pap at night. My lung VC has dropped over 30% since March. This is debilitating.

(2) Swallowing liquids is becoming difficult at times.

(3) I have lots of involuntary movement in my arms and legs. They jerk own their own at times. I have a lot more leg cramps than ever. My sleep doctor diagnosed Periodic Limb Movement Disorder.

(4) I have had sharp, burning, electrical pain in the outside of my thighs. Right leg more than left. Pain is excruciating.

(5) I am occasionally having trouble choosing the right words to say or selecting the correct word for objects. I also am not "sharp" in my thinking right now. I hope this is from all the medication to combat the headaches.: (6) Vision disturbance and eye pain are a constant issue.


This next section is very long. I have included it for documentation since my insurance companies and some medical professionals follow this blog. It compares my symptoms from January 23, 2010 through September 9, 2011.

Whole Body Involvement
: January 23, 2010: I feel my entire body is being effected to varying degrees by whatever this condition is.; March 21, 2010: This has not changed.; April 04, 2010: Part of my nervous system is improving, parts are staying the same, and nothing is getting worse.; July 24, 2010: Some symptoms seem to be worsening.; October 01, 2010: This has not improved.; December 01, 2010: My whole body is still effected.; January 17, 2011: This has not changed at all. From my perspective, I am still slowly worsening.; March 28, 2011: Same.; September 9, 2011: This is progressively worsening.


Needle Pricks
: January 23, 2010: I do not feel needle pricks over almost my entire body. I can feel pressure and touch, but not sharpness.; March 21, 2010: This has not changed.; April 04, 2010: I can feel a few more needle pricks, enough that I just do not stick my body any longer as I once did. I feel needle pricks over about 10% of my body now.; July 24, 2010: I am losing the ability to feel needle pricks again over my entire body.; October 01, 2010: This has not improved. I only feel needle pricks on about 15% of my body.; December 01, 2010: I slightly feel needle pricks on less than 10% of my body.; January 17, 2011: This has not changed. I slightly feel needle pricks on less than 10% of my body.; March 20, 2011: Same.; September 9, 2011: No pain, but no gain either! I do not the the burn of "lidocaine" when injected anymore.

Tingling

January 23, 2010: I tingle all over; legs and arms more than the rest of my body. The intensity of the tingling can vary.

March 21, 2010: I still tingle all over but to a lesser extent. My arms do not tingle nearly as much as they did.

April 04, 2010: This has not changed since March.

July 24, 2010: I am tingling more and more. Over the last few weeks, this is much worse during the night and often wakes me up from sleep.

October 01, 2010: This may have worsened. I still tingle and the are a few areas that feel very numb. On occasion, it seems as if I do not feel my body at all. It's like I am detached from my body.

December 01, 2010: This continues to worsen slightly. I still tingle and there are a few increasing areas that feel numb. On occasion, it seems as if I do not feel my body at all. It's like I am detached from my body.

January 17, 2011: More tingling and numbness over almost my entire body. Major pain area is in my knees to feet on both legs and forearms to hands on both arms.

March 20, 2011: Same.

September 9, 2011: Same.

Tremors

January 23, 2010: I feel shaky and trembly from the inside-out almost all the time, but it does not feel like hypoglycemia. Another person on a neuropathy website described the feeling like 'vibrating all over'.

March 21, 2010: I still feel trembly, but not as intense.

April 04, 2010: This has not changed at all since March. I may have to live with the tremors.

July 24, 2010: The tremors and shakiness have increased a little.

October 01, 2010: This has not improved. I have developed an occasion jerk in my left arm and both legs on occasion.

December 01, 2010: I still have slight tremors and occasional jerks in my arms and legs. I feel trembly all of the time.

January 17, 2011: My tremors seem to be increasing in my left arm and legs. The tremors are more pronounced with activity.

March 20, 2011: Continuing to increase.

September 9, 2011: Continuing to increase.

Shortness of Breath

January 23, 2010: I have trouble climbing stairs and getting out of chairs. It feels like I have a lack of strength in my knees and legs. I become short of breath easily with almost any activity. It is then difficult for me to catch my breath.; March 21, 2010: I can climb stairs better, but I am still having trouble catching my breath.; April 04, 2010: This is improving slightly. I still have trouble catching my breath at times.; July 24, 2010: This has worsened since April. I was tested for Primary Pulmonary Hypertension. The heart catheterization was negative for PPH. Breathing and variable heart rate are major problems for me now.; October 01, 2010: This is definitely worse.; December 01, 2010: I am very short of breath. I become short of breath easily with almost any activity. It is then difficult for me to catch my breath.; January 17, 2011: Shortness of breath is still a major problem for me. It severely limits my walking and daily activities.; March 20, 2011: Much worse.; September 9, 2011: Much worse. Very disabling.


Exhaustion
: January 23, 2010: I feel tired and exhausted all of the time. I never get rested, stop tingling, or aching.; March 21, 2010: This has not changed too much. I am a little more rested.; April 04, 2010: I feel stronger and more rested. I think this is improving with time.; July 24, 2010: This has worsened some. The breathing problems have caused me to feel not as rested as in April. I become exhausted with very little exertion and my heart rate usually elevates quickly.; October 01, 2010: This is definitely worse.; December 01, 2010: The exhaustion improved after the PLEX in October, but the effects are wearing off and I become exhausted easily now.; January 17, 2011: The exhaustion has returned after the PLEX. Even the IVIG in December did not help the exhaustion. Combined with the breathing problems and weakness I am very limited in what I can do.; March 20, 2011: Same.; September 9, 2011: Worse.


Weakness
: January 23, 2010: I feel extremely weak and cannot do what I once did. When I try to do some physical activity for a length of time, my body just seems to stop trying.; March 21, 2010: My physical strength is slowly improving. I am still a long way from recovering my full strength, but I can tell some improvement.; April 04, 2010: My strength is continuing to recover. I can tell my muscles are way-out-of-shape and will take some time to rebuild. I still am not pushing myself too much at this point in time, but I am progressively increasing my activity level.; July 24, 2010: My strength has reached a plateau and fades quickly with use.; October 01, 2010: This is definitely worse.
: December 01, 2010: My strength improved after the PLEX, but is declining again.; January 17, 2011: I weaken easily again. The Mestinon only lasts for about 3 1/2 hours.; March 20, 2011: Same.; September 9, 2011: Same.

Walking and Balance

January 23, 2010: I have trouble walking and keeping my balance. I really have to concentrate on walking to make my legs move. Walking any distance (a few blocks) is a real problem.; March 21, 2010: My walking and balance is better. I can walk a little faster and a little further. My balance seems better, too.; April 04, 2010: My balance and walking continue to improve. I can walk faster and further than just a few weeks ago. I actually worked in my yard a little on Friday of this week.; July 24, 2010: I cannot walk as far, but may be due to my shortness of breath.; October 01, 2010: This is similar to July. I use a walking stick if I have to walk any distance. I now have a disabled parking permit.; December 01, 2010: My walking gate is not as smooth. I feel like I limp. I still use a walking stick for any long distance. Walking any distance, such as hospital visitations, is a real problem for me.
: January 17, 2011: Walking has not improved. I have fallen three times since early December 2010 because my legs were asleep. Because my I feel numb and tingle, I cannot always tell when my legs are asleep.; March 20, 2011: Same.; September 9, 2011: Same.

Aching

January 23, 2010: My legs ache from my upper-thighs down. My arms ache from my elbows down.; March 21, 2010: My legs still ache very much. My arms are not aching at present.; April 04, 2010: This has not changed since March.; July 24, 2010: My arms and legs are aching. My ankles and feet have more burning pain and numbness.; October 01, 2010: This has not improved.; December 01, 2010: I ache more now than before the PLEX in October. Both arms and legs. I also have more burning pain now than before and the burning area is increasing in size.; January 17, 2011: My total pain level is increasing, both burning and aching.; March 20, 2011: Same.; September 9, 2011: I hurt much more now.


Autonomic Nerves
: January 23, 2010: The condition is now definitely evolving to include my autonomic nerves. The autonomic nerves control all bodily functions including breathing, heart rate, kidney function, sweating, etc.; March 21, 2010: This has not changed.; April 04, 2010: This has not changed.; July 24, 2010: This has worsened.; October 01, 2010: This has not improved.; December 01, 2010: This has not changed.; January 17, 2011: This has not changed.; March 20, 2011: Same.; September 9, 2011: Same.


Hypohidrosis: January 23, 2010: I have greatly reduced sweating. I basically only sweat on my forehead on rare occasions. If I have on a lot of clothing and if I am very hot, I may sweat under my arms a little. I normally have sweated heavily for most of my life.; March 21, 2010: This has not changed.; April 04, 2010: On Sunday, March 28, 2010, I actually sweated while preaching. Wow! Great! This is a major improvement. It may have been a combination of activity and the hot stage lights, but I really sweated on my forehead. I may have develop some very light sweating under my arms, but it is difficult to tell for sure. As mentioned in an earlier post, I feel like I might be sweating at times, but moisture is not present.; July 24, 2010: This is the same as April.; October 01, 2010: This has not improved. I do sweat a little more on my forehead because of all the medication.; December 01, 2010: I basically still do not sweat. The exception is an occasional "hot flash" about 30 minutes after taking the CellCept. I will sweat for a few minutes then.; January 17, 2011: This has not changed.; March 20, 2011: Basically the same, but I feel "clammy" at night. Some additional sweating on forehead with exertion.; September 9, 2011: Same.

Body Temperature Regulation

January 23, 2010: I am almost constantly cold. In the past, I was never cold. But my body seemed to change a few years back. I am colder this year more than ever.; March 21, 2010: This has not changed.; April 04, 2010: I still feel cold most of the time. Strangely enough, the hotter weather is really beginning to bother me. I guess this is connected with the hypohidrosis (reduced sweating). I must be careful not to overheat. This is still part of my autonomic nervous system that seems to be most affected now.; July 24, 2010: This is the same as April.; October 01, 2010: This has not changed.; December 01, 2010: I can still overheat if I am not careful. Strangely enough, I still feel cold but the cold does not really bother me. I do not think my body is registering the cold temperatures properly.; January 17, 2011: This has not changed.; March 20, 2011: Same.; September 9, 2011: Same.


Appetite and Weight
: January 23, 2010: I feel constantly full and am almost never hungry. I could go literally a day without eating. My current weight is 257 lbs, down from 282 lbs without trying to lose weight.; March 21, 2010: I still feel full and have no appetite. I force myself to eat and have been able to keep my weight around 260 pounds. I did have a lot of fluid retention from the plasmapheresis.; April 04, 2010: This has not changed since March.; July 24, 2010: I have had steroids a couple of times since April for various reasons. They always make me hungry and I eat. I also think my body is retaining fluids. My weight is about 270 currently.; December 1: 2010: Weight gain is a problem. Still feel full,but not really hungry. Diet has not changed from what it was earlier this year.; January 17, 2011: My weight is still increasing due to medication.; March 20, 2011: Weight stabilized around 315.; September 9, 2011: Don't want to talk about it!


Photo-sensitivity: January 23, 2010: Sunlight, or bright spot-lights, make my face feel like it has been sunburned or like ants are biting me. I avoid sunlight.; March 21, 2010: This has not changed.; April 04, 2010: This is still a real problem for me. The last few days have been warmer and sunny and I have tried to spend more time outside. Sunlight hurts my skin. I feel like I have an instant sunburn. I have a dark-complexion and sunlight has never bothered me before. Even when I would sunburn, It would quickly turn into a tan. Not anymore! I have not tried sunblock—I don't like the idea of chemicals on my skin. So for now, I cover up when I go outside. Strong spot or flood lights have the same effect. It is almost a heat/infrared sensitivity.; July 24, 2010: This has not changed since April. I did go out in the sun long enough to get a sunburn. Strangely enough, the sunburn itself did not hurt.; October 01, 2010: This has not changed.; December 01, 2010: I still feel pain from sunlight.; January 17, 2011: This has not changed and I avoid sunlight.; March 20, 2011: Same.; September 9, 2011: Same.

Orthostatic Hypotension

January 23, 2010: My orthostatic hypotension readings at 9:30 AM, two hours after eating were as follows:
Lying down: 146/81 pulse: 59
Standing one minute: 133/83 pulse: 102
Standing three minutes: 126/83 pulse: 86
Standing five minutes: 132/86 pulse: 84
Standing ten minutes: 130/88 pulse: 102

March 21, 2010: I did notice an increase in my pulse rate since thetreatments. Before, my pulse would be in the 50's while resting. Lastweek my pulse rate was in the upper 80's while resting. On Saturdayand today, it seems to have dropped to the upper 70's while resting.I also did a quick check of my blood pressure this morning. Myreadings were:

Lying down: 157/74 pulse: 67
Standing one minute: 126/69 pulse: 103

Later, I did the full twenty minute orthostatic hypotension test. Myreadings were as follows.

Lying down: 157/76 pulse: 83
Standing one minute: 141/83 pulse: 107
Standing three minutes: 139/89 pulse: 108
Standing five minutes: 146/90 pulse: 109
Standing ten minutes: 148/93 pulse: 120
Standing twenty minutes: 134/95 pulse: 126

April 04, 2010: I did the full twenty minute orthostatic hypotensiontest on Saturday, April 3, 2010, at 10:00 AM, two hours after eating.My readings were as follows.

Lying down: 150/77 pulse: 70
Standing one minute: 111/71 pulse: 130
Standing three minutes: 138/89 pulse: 114
Standing five minutes: 141/89 pulse: 115
Standing ten minutes: 141/93 pulse: 106
Standing twenty minutes: 134/87 pulse: 131
Sitting down five minutes later: 148/85 pulse: 82

I still have indications of orthostatic hypotension with a large drop in BP, and increase in pulse rate at one minute this morning. My overall resting pulse rate is dropping back to normal rates for me.

July 24, 2010: My heart rate and blood pressure have been erratic for several weeks. There is a connection to my breathing problems. Orthostatic hypotension is still present. I did the full twenty minute orthostatic hypotension test Tuesday, June 30. My readings were:
Lying down: 149/86 pulse: 75
Standing one minute: 107/81 pulse: 127
Standing three minutes: 128/90 pulse: 113
Standing five minutes: 138/88 pulse: 115
Standing ten minutes: 142/92 pulse: 115
Standing twenty minutes: 125/97 pulse: 127
Sitting down twenty minutes later: 139/88 pulse 83

December 01, 2010: I have had a few instances of OH since the PLEX. Nothing unusual or recorded. My blood pressure has tended upward.

January 17, 2011: Heart rate still fluctuates easily from low 50's to120. My blood pressure is slowly increasing because of medication andweight gain. Currently it runs 190+/90+.

March 30, 2011: Blood pressure became amajor issue. It went as high as 200+/100+ in February. I started onLisinopril and my pressure is under control. Too much medication andI have orthostatic issues again. Currently BP runs 145/85.

September 9, 2011: Recent autonomic testing showed my autonomicnerves to my heart were working OK. My blood pressure stillfluctuates and I get very dizzy at times. My heart rate varies from55 to 150 within a couple of minutes. My heart is trying tocompensate for my breathing difficulties.

Vision: January 23, 2010: My vision changed somewhat in July 2009. My peripheral vision field is much less than normal for me.; March 21, 2010: I have noticed some improvement in my vision. My peripheral field is increasing some. It is still not back to normal, but is decidedly better.; April 04, 2010: My peripheral vision is almost back to normal. I have more than a 180 degree field of vision now. This is more normal for me.; July 24, 2010: My vision blurs from time to time.; October 01, 2010: This is worsened. My eyes will physically hurt and my vision will blur.; December 01, 2010: This is a major problem for me right now. Eye pain, blurred and double vision on occasion. I do not drive at night because of my vision.; January 17, 2011: My ophthalmologist visit did not reveal any "eye" problems. The double vision and blurred vision are consistent with Myasthenia Gravis. I still have a lot of pain and aching when I move my eyes. My eyes hurt all the time.; March 20, 2011: Same.; September 9, 2011: Vision is worsening. If I look straight ahead, vision is basically OK. If I shift my eyes, I have double vision. Moving object blur easily. I do not drive much at all now.

Tenth Cranial Nerve Palsy: January 23, 2010: I was diagnosed around 2005 with a partial CN10 palsy that effects my throat and gag reflex somewhat. I do not feel hot or cold on the interior left of my throat when I swallow. I have not had any trouble swallowing, but I do not feel the temperatures.; March 21, 2010: This has not changed.; April 04, 2010: This has not changed.; July 24, 2010: This has not changed.; October 01, 2010: This has not changed. I did eat a slice of jalapeno pepper (rare for me) the other day. I could feel the burn on the right inside of my throat, but not on the left.; December 01, 2010: No change.; January 17, 2011: No change.; March 20, 2011: Same.; September 9, 2011: Same.


Voice
: January 23, 2010: I have noticed my voice getting weaker and raspy over time. I pastor a church and I preach four times a week (three times on Sunday). My voice is becoming a real concern for me.; March 21, 2010: This has not changed.; April 04, 2010: My voice seems better to me.; July 24, 2010: My voice is more like January 23 again.; October 01, 2010: This has worsened. My Uvula is beginning to flop and touch the back of my tongue when using my voice.; January 17, 2011: This continues to slowly worsen. My voice get weak with use and it is difficult to engage in sustained conversation. I had to shorten my sermons over the last few weeks because my voice would not last.; March 20, 2011: Same, except I am not preaching now.; September 9, 2011: Worse.; Click here for an example of my voice problem.

Jaw/Temple Pain: January 23, 2010: My jaw muscles hurt when I eat anything hard, such as M&Ms®.; March 21, 2010: There is no change here. I like M&Ms®, but since it hurts to eat them I have opted for cheese cake instead.; April 04, 2010: I still opt for cheesecake, when Cathy lets me eat it.; July 24, 2010: I still have pain in my left jaw, but now the pain has shifted more toward my left temple and really hurts. I am also experiencing pain in the bridge of my nose and slight pain in my right temple. I cannot wear my glasses at present because of the pain. My vision changes somewhat daily.; October 01, 2010: The severe pain has turned into generalized jaw pain.; December 01, 2010: This has not changed.; January 17, 2011: This has not changed and I notice it most in the morning when I have not had my Mestinon. The more I chew, the more I hurt.; March 20, 2011: Same.; September 9, 2011: This is slightly worse.

I will do this comparison again in six months.

Chemo Update

2011-09-07T08:13:00.000-04:00

I will not start the Cytoxan until Friday, September 9. This works better for our scheduling.

Chemo Begins September 8

2011-09-01T12:18:00.002-04:00

The insurance approval just came through. I start IV Cytoxan chemotherapy next week of September 8. I will have six months of chemo.

Starting Cytoxan Chemotherapy Soon -- Why?

2011-09-01T07:51:00.000-04:00

My Vanderbilt doctor has worked really hard at figuring out what is happening and how to treat me. My doctor is a professor of medicine who specializes in Myasthenia Gravis and ALS.

My MG is not responding to treatment, probably because I test negative for MG except for the Single Fiber EMG--which is the gold standard for diagnosing MG. It is the same way with the Small Fiber Neuropathy. I test negative on the skin biopsy, but clinically my small fiber nerves feel nothing at all. Lots of my testing has been evaluated by Mayo and Johns Hopkins.

These are all autoimmune diseases. They know my body is producing an antibody that has and is damaging my nervous system. They do not know what antibody is causing the problem and it would take years of research to figure it out. I am negative for all known antibodies. That figures!

The standard treatments for any autoimmune disease begins with prednisone and progresses from there. I have been on an organ-rejection drug for over a year to reduce my immune system. I have had all the "big gun" treatments: IVIG to overload my immune system with good antibodies and Plasma Exchange (22 treatments) to pull ALL antibodies from my body. Nothing has stopped the progression yet, but has slowed it somewhat.

The next step is IV Cytoxan chemotherapy. This is reserved for severe cases. The goal is to reduce my immune system even more and hopefully stop the progression. If the progression is stopped the damage to my nerves may improve over a long, long time.

We weighed the serious side-effects against the continued decline and opted for Cytoxan. If my MG is not stopped, I will eventually be on a portable ventilator to keep me breathing. My breathing muscles keep getting weaker. I start chemo as soon as insurance approves the treatments.

The absolute last step is called HiCy. It is high dose Cytoxan that will destroy my immune system (except for my own stem cells). In theory, it will reboot my immune system. But it would require my to spend a month in Hospital isolation and weeks of isolation near the hospital. This is similar to a bone marrow transplant. But that is the last option and not on the table at this point.

What I like about Vanderbilt and my Neurologist is that I can email him directly at any time. He has even called to talk with me on occasions. He listens and takes a lot of time with me! That is hard to find in a doctor now. I have read a lot about my condition in medical texts so I can ask the tough questions about my condition and treatments. He thinks outside the box as well, which i really like.

So far, I am the only one who has this combination of MG and Small Fiber Neuropathy to this extent. Even my insurance company has assigned me a case manager and the talk about my case once a month. I am a "lab rat." This is one reason I have been doing the blog and videos.

Next Step

2011-08-22T17:13:00.003-04:00

Just returned home from Vanderbilt and the Neurologist. The plasma exchange does not seem to be effective any longer . . . so I will not have any more plasma exchanges. Tomorrow's exchange is canceled. I had 22 exchanges in just a little over a year.

The tunneled catheter will be removed from my neck/chest soon and I begin monthly Cytoxan treatments (chemotherapy) at Vanderbilt. I am waiting for scheduling now.

UPDATE: Cath was removed on August 29. No problems.

Breathing Update

2011-08-11T18:38:00.001-04:00

I was a long day at the Pulmonogloists. Lots of testing and a trip to the hospital for lab work. So far the test indicate my breathing has worsened. That what I already knew!

Plasma Exchange Update

2011-08-10T08:21:00.000-04:00

The plasma exchange went well yesterday. I did not get sick. This is very, very good!

A Busy Week

2011-08-08T08:06:00.003-04:00

This will be a very busy week. I have two doctor appointments and a plasma exchange scheduled. I will update the results later.

You may remember me talking about my hair changes. In later 2010, the hair on me legs began to fall out probably because of the PLEX. In early 2011, my hair began to darken probably due to IVIG. It has since lightened. Now that I am on PLEX again my beard is beginning to fall out.

Two Bad Days

2011-08-04T09:04:00.001-04:00

The Plasma Exchange (PLEX) at Erlanger went will during the procedure on Tuesday August 2, 2011. They gave me zofran before the procedure. Immediately after the PLEX, I went to the restroom and promptly threw up, twice. They gave me more zofran and I made it home only to throw up again. Needless to say, Tuesday PM and Wednesday were not good days--very, very sick. I throw up very hard, so my stomach and chest muscles are very sore today and make it hard to breathe. Doing OK now.

Treatments at Erlanger in Chattanooga and Other Information

2011-08-01T11:39:00.008-04:00

It has been a couple of weeks since I reported what is happening. So, here is a quick update. The church gave Cathy and me a wonderful reception a few weeks ago. A special memento they order did not arrive in time for the reception. A few weeks ago, they presented me this wonderful gift during the morning worship service. You may remember the April 27, 2011 tornado ripped the steeple off our church. Some of the steeple stained-glass windows were not damaged. Beverly Callaway, Jim Bailiff and others took one of the old windows and had this stained glass cut and crafted for us. It is beautiful. Thanks so much! Notice the dove as symbolic of the Holy Spirit, the circle for eternal life, and the Cross as a reminder of salvation. As I told the church when they presented me with this, "Out of destruction, something beautiful comes!" I begin weekly PLEX (plasma exchange) on Tuesday, August 2, 2011 at Erlanger Medical Center in Chattanooga. This will my PLEX number 20. Dr. CL from Vanderbilt arranged this for me through Dr. RS at Nephrology Associates in Chattanooga. My first treatment at Erlanger will be at 8:00 AM. This is great since treatments will be here in Chattanooga rather than Nashville. That will save a lot of drive time. My arm and leg strength has been the same for a few weeks. The PLEX has slightly helped my strength. My muscles cramp and hurt a lot more over the last few weeks. Medication helps, but let cramps sure hurt. My double vision seems to be worsening a little. I have double vision when I look any direction except straight ahead. My eyes cross when I bite my food now. Looks like I am eating twice as much, but half the food is tasteless. My breathing is a little worse. I cannot sleep on my side/stomach because it does not let my muscles move enough. It seems that the upper part of my lungs/chest is not getting as much movement. Almost any activity exacerbates my breathing issues. My heart rate still increases when I cannot breathe. My voice and swallowing are still interment problems. The small fiber issues are slowly worsening. The bottom of both feet are very numb and tops are hypersensitive. The outside of my right leg really hurts, burns, and feels numb all at the same time. I still tingle and feel numb all over. I still do not feel needle sticks over almost all of my body. Otherwise, I am doing fine!

Test Results -- Updated

2011-07-13T12:48:00.004-04:00

The lump biopsy and Autonomic Function Testing all came back normal. This is very good! But it does not change the fact that I have great difficulty breathing and my heart rate really increases with activity.

Right now all indications are the my breathing problem are the result of myasthenia gravis (MG) damaging my diaphragm. Last November/December 2010, my diaphragm was working at about 40%.

So when I have difficulty breathing and my heart rate rises when I walk or engage in activity, it is probably a response to my diaphragm having to work harder for me to breathe because it is weakened from the MG. This is really debilitating.

(Update: I just heard from Dr. CL and he agrees with the above statement. I see him again on August 22.)

The treatment: Plasma exchange every week for the next four to six weeks. Then we decide what to do from there!

Autonomic Function Testing

2011-07-13T10:08:00.003-04:00

Yesterday was a long day for Cathy and me. My appointment for Autonomic Function Testing was at 4:30 PM (GA time). We left for Vanderbilt at noon and arrived home again at 9:45 PM. The testing took about one hour and the focus was on my heart rate and blood pressure.

I had to discontinue some of my medication and caffeine for 48 hours before the test. Needless to say, I was not feeling well yesterday. If I ever question the effectiveness of my medication, just leave it off for a few days and I know I need it. Without my medication I tingle much more, I have increased SFN sporadic pain, and I become very, very restless. I did not sleep much at all Monday evening.

After the testing, I took my medication and began to feel much better. I will post the results of the test when I know them.

I am still waiting on the biopsy report from the lump in my left arm. It should be ready soon.

So far, my strength and stamina are still where they were last week. My breathing and double-vision have not changed.

18th PLEX Treatment, Biopsy, and Neurologist Appointment

2011-07-08T08:21:00.001-04:00

Yesterday (July 7, 2011) was a busy day at Vanderbilt: PLEX, Dr. exam, and biopsy on the lump in my left arm. We arrived around 10:45 AM and they took me to dialysis about 11:00 and hooked me up to the PLEX (plasma exchange) machine.

Dr. CL had called me while we were on the way to the Hospital and arranged for me to call him back when I was in place and receiving treatment so he could set things in motion. It was good that Cathy was with me today.

The pathology biopsy team came and begin working on my arm while I was receiving the plasma exchange. They were very nice and professional. They explained the procedure to me. They would take 18 and 22 gauge needles and stick the lump and "jiggle" the needle up and down in the lump to collect "lump cells." They stuck and jiggled me five times. They said I was the "best patient ever." That's because I did not react to the pain because I did not feel the needle sticks. That is both good and bad. Good because it did not hurt. Bad because it indicates my condition has not improved.

Dr. CL stopped by at 1:00 PM (while I was having PLEX) and did his exam and we talked for a while. Right now the strength in my legs and arms has improved. My breathing, voice, and vision are still essentially not changed. The current plan is for me to have the PLEX treatments every week. It looks like I will be able to get them at Erlanger in Chattanooga. That will save a lot of time and driving. I am also scheduled for autonomic testing next week in Nashville. Maybe that will add another piece of information to the puzzle.

Appointment Change

2011-07-06T08:24:00.005-04:00

The appointment with my neurologist has been moved up to July 12 from August 22. It looks like I will be doing PLEX every week now. Things are in work to have the PLEX at Erlanger in Chattanooga. That will be a much shorter trip and less tiring for me.

I will have a biopsy on the lump in my arm and spot on my eyelid on July 12, looking for another type of amyloidosis (not familial). I will also have some autonomic nervous testing soon.

Test Results

2011-07-01T07:12:00.001-04:00

The testing for Hereditary Amyloidosis is negative. That is good since amyloidosis is fatal. But that still leave more testing ahead for me.

Reception Last Sunday Evening

2011-06-27T21:55:00.001-04:00

Ringgold FBC hosted a wonderful reception in our honor last night (Sunday, June 26). Words cannot begin to express our thanks for such a kind showing of love and support. The cards and words of appreciation were deeply moving. The cake, desserts, and home-made peach ice cream were all delicious. Thanks to all who helped make this possible.

Cathy and I had the privilege to serve you for four years. The last two years were not at my physical best. You have truly blessed and provided for me and my family during this time. I am confident that the Lord will bless you for taking care of one of His ministers. You have served Him well in ministering to me.

I am continuing treatments at Vanderbilt and they are still evaluating other possible causes for my physical condition. I will post the results of the amyloidosis testing as soon as I know.

Our plans are to stay in Ringgold and keep out membership at First Baptist--this is our home.

Next PLEX

2011-06-22T22:50:00.003-04:00

I am heading back to Vanderbilt for my next plasma exchange on June 23. No report yet on the amyloidosis testing.

I have also had a lot of problems with the orthostatic hypotension this week. My blood pressure falls when I stand and my heart races. I drink a lot of water to combat this condition. It is really bad if my body is overheated.

First Week of Not Being a Pastor!

2011-06-15T19:59:00.002-04:00

You may be aware that I have resigned as Pastor of Ringgold FBC. I had actually planned to announce this in May--after my three days in Vanderbilt at the end of May 2011--but the devastating tornadoes changed my plans. So, I waited until the first Sunday of June to resign.

It is strange to be unemployed and on disability, but there is no way I can work. This June, I celebrated my 40th year as a licensed minister. I began preaching at the age of fifteen. I had hoped to make a full 50 years in full-time ministry but that is not going to happen now.

It has been a while since I have written in depth. Why? First, not much has changed with my symptoms even though I am getting additional treatments. I still cannot breath and my vision still doubles. Second, my hands are beginning to cramp a lot when I type or use the mouse. That is not a good thing. Third, I have just not felt like writing much over the last several months. I have not even produced a new video during this time.

The plasma exchange (PLEX) really drains my body literally and physically. The smell and taste of the new fluid as it mixes in my body nauseates me. Yes, I can smell and taste it through my blood as it enters my lungs, tongue, and stomach. It takes several days to get over a PLEX.

The treatments help stabilize my condition. Let me explain a little better. For a few days after each treatment, my walking slightly improves and I have a little more stamina (very little). By the end of the week after treatment, I am back to where I was before the treatment. After two weeks, my condition has declined just a little worse than before the treatment. So treatments are keeping me stable or on a slow, long decline. In the near future, I may get PLEX every week.

I was out of the Alpha Lipoic Acid for a few days. It helps with the pain of the small fiber neuropathy. It does work and I do need it. I have had a lot of small fiber nerve pain over the last few days and regular pain killers are not very effective in controlling the pain.

My autonomic nerves (they control all bodily functions) have really been acting up in the heat. My blood pressure is up and down and I can get dizzy and feel faint very easily. I overheat because my sweating is reduced.

During my last PLEX treatment at Vanderbilt, Dr. CL stopped by and we had a good conversation. He has been reviewing my case and thinks I may have another condition along with Myasthenia Gravis, Small Fiber Neuropathy, and Autonomic Neuropathy. We have talked about this before but never really came to a clear diagnosis because my symptoms are so weird. He thinks I may have Amyloidosis and tested me for it through blood work. I should know the results is about two weeks.

Amyloidosis is a very serious disease and could be the cause of my Small Fiber and Autonomic Neuropathy. Of course there is no cure and it is often fatal. We shall see what happens!

Latest News

2011-06-12T08:43:00.003-04:00

I had my sixteenth plasma exchange at Vanderbilt on Thursday. Things went well, but I had some nausea. Dr. CL stopped by and we had a good conversation about my future treatments.

He is testing me for a condition called amyloidosis--a rare and serious condition. I should know the outcome in a few weeks. It could be the cause of my small fiber and autonomic neuropathy.

The future direction of my treatments will depend on the outcome.

No Longer Can Continue as Active Pastor

2011-06-07T11:02:00.002-04:00

This past Sunday I notified the church that I would not be able to return to work as their pastor. Over the last six months, I have rested and continued some very powerful treatments (about $170,000 for the last six months). At this point, I have not improved in my condition.

I am currently receiving plasma exchange every two weeks and may begin a weekly cycle of treatments this summer. We hope that continued treatments will at least keep me stable and give me some relief from the symptoms. My next plasma exchange is this Thursday (June 09).

The test from the cardiologist all came back normal. That is great!

Cathy and I thank everyone for their prayers and support.

Condition Update & Future Plans

2011-06-03T13:56:00.002-04:00

I will address my current physcal condition and future plans on Sunday, June 5, after the morning worship service.

Here is the latest update on my condition.

2011-05-24T19:44:00.007-04:00

My next PLEX (plasma exchange) is May 26, 2011. This will be my fifteenth treatment in a year. I currently receive a one-day PLEX treatment every two weeks at Vanderbilt Medical Center in Nashville.
Click here to see a video about plasma exchange.

The majority of my symptoms remain the same except I feel a little stronger and have a little more stamina after each PLEX treatment. But even that "stronger feeling"usually wears off before the next treatment. At least this gives me some slight, temporary benefit.

At the end of April, I spent some time in the ER at Memorial Hospital with dizziness, head pressure, and vision blacking out. Everything checked-out OK and was probably a condition called presyncope (near fainting) because of my autonomic nerve damage.

I went back for a yearly checkup with my cardiologist. Since an echocardiogram last May showed I had a enlarged right heart ventricle and I have severe breathing problems, the cardiologist ordered a new contrast echocardiogram. I have not heard the results yet. One of the conditions that can cause breathing problems is pulmonary hypertension (PH). There were indications last year that I had PH, but the heart-cath indicated that I did not have PH. We shall wait and see.

My breathing has not improved and the presyncope is still happening from time to time. My blood pressure has been from high to low at various times. I am shaking more and the involuntary jerking is slowly increasing. The summer heat is playing havoc with my body temperature. I am being careful not to overheat. And I still have a lot of cramps in my legs.

Still hanging in there. Soli Deo Gloria!

A Day in the ER

2011-05-07T18:29:00.002-04:00

I spent most the of day in the ER at Memorial Hospital in Chattanooga. Dizzy, pressure in head, vision problems. Everything checked out OK--no blood clots from the vascular catheter. Just another part of my problem. Home and resting.

Ringgold Tornado

2011-05-01T10:21:00.002-04:00

Our town was devastated by a tornado last Wednesday. Our thoughts and prayers are with those effected and involved in the recovery effort.

You can find out information about the April 27, Ringgold tornado on my FaceBook profile.

https://www.facebook.com/profile.php?id=100000803707408

Cathy's Blog - Thursday, April 28

2011-04-29T10:14:00.002-04:00

Mornings start early here and by 7:00 AM Kerry was on his way to plasma exchange. He still does not feel like writing. His breakfast came as soon as he left so since he was not here . . . I had to eat it. It was a right fine breakfast with no additional cost.

I wrote some on this blog, talked to several people, and went to the car and brought back what we would need for Friday morning. Then I went to check on Kerry and he was almost finished with his treatment! This was surprising. The machine was set on a faster setting, there were no problems with clotting and the treatment was completed quicker. The nurse gave him some medicine, checked his vitals and we were waiting on the transport team to deliver him back to his room on the 6^th floor, by 10:30 AM.

After he was brought back to his room, he was checked in, vitals taken etc. Lunch soon arrived. The lady who brings up the food from the kitchen had an extra tray, so she gave me one too. That's two meals I didn't have to purchase.

Kerry sat up for a while and then decided to lay down for a nap and quiet time. Well, the best laid plans often go astray. One of Kerry's doctors stopped by, respiratory came by to check on his intake and outflow, then it was time for more medicine.

After all of that, Kerry wanted to sit up some so I laid on the edge of the bed and had a nice nap. Then guess what? We had to change rooms! The room we were in was a sleep study room and it was needed. So we load up (around 4:00 pm TN time) and went down the hall a short way to our new room. This one (hopefully) will be quieter since it is not across from the nurses station.

They have been checking Kerry's blood sugar while he has been here and it has been a little high. He has had several insulin shots. It was just a little high now when the nurse check it and he had another small dose of insulin. Prednisone will spike it one's blood sugar. Kerry has not felt too good (yesterday of course) or today. I am hoping that this treatment will soon help him to feel more like himself.

They will probably bring his evening meal in a short while and I will go down to the cafeteria. See you later.

Cathy's Blog - Wednesday, April 27

2011-04-27T10:04:00.003-04:00

Today is Wednesday, April, 27, 2011 and we are at Vanderbilt Hospital for Kerry to receive his third round of Plasma exchange. This will make a total of thirteen individual exchanges. We had good weather for about half of the trip then the bottom fell out: thunder, lightning, raining cats and dogs. On the way here, the wind was blowing really hard and rain was blowing all over the place. Thankfully, I had used Rain-X on the windows and the rain was dancing off our windshield, so visibility was fair. At one point, we came to a slow crawl and I thought, "Oh no! There's been a wreck and we are going to be late!" But traffic started moving again. When the rain and wind first started, we saw a pick-up that looked like the wind had blown him off the road and there were a couple of cars that spun around to face the opposite direction than they were originally traveling. One car was in the HOV lane and the other in the emergency lane. Needless to say, it was bad driving weather but by the time we arrived the rain had become a slow drizzle.

We were debating whether or not to go to the Atrium Pancake House (which is a popular place to eat and people stand in long lines just to get in the door) or just go on to the hospital, get registered, and then go to the cafeteria for breakfast (mine, not Kerry's). We went to the cafeteria.

It was suggested that he register early for his three day hospital stay and he did around 8:30 am. It took hardly no time at all to register (believe it or not) and since his procedure wasn't scheduled until 11:00 am we had plenty of time to eat! After my breakfast, he registered at radiology and shortly after his name was called.

We made our way down the hall to the surgical holding area and I was given a beeper. We are placed in a “curtained room” and Kerry's clothes were exchanged for a hospital gown. The nurses did their pre-surgery routine and we waited.

Usually with this procedure they use contrast dye to which he is allergic. So Kerry was pre-medicated with 25 mg Benadryl and 50 mg of prednisone.

The Radiology Intern came in and introduced himself. He asks if Kerry has had this procedure before. He has, but this is slightly different. This time Kerry will have a Tunneled Catheter. This means the catheter will inserted into the jugular and be tunneled under the skin coming out a few inches below the neck line. This procedure is supposed to help keep the line in place (using the skin growing around it) and also to help keep down germs. (y’all all know how I feel about germs) You definitely do not want germs--especially going down the line to the heart and lungs.


After the catheter insertion, Kerry went for plasma exchange. I sat in the waiting room read my magazine, dozed, had lunch, and went to the car to re-arrange my baggage. At 2:30 PM I went back to the dialysis ward to check on Kerry's progress. They had some problems with the catheter clogging up with blood clots so things were progressing slowly. Around 3:00 PM I received the news that we had been assigned a room, I went to the car and got our stuff and headed to our private room. I neatly stacked our stuff and went to eat supper.

I was back in the room and quietly reading when a tornado warning (code orange) was sounded, so I, along with the patients were moved the hallway. By the time I was seated good, they were bringing Kerry back. They brought up his supper, which he hungrily ate and after fifteen minutes or so were finally able to go back to the room.

It is now 7:30 pm TN time, I am tired and will say goodnight.

Plasma Exchange Again

2011-04-24T16:49:00.001-04:00

I will be admitted to Vanderbilt again for a few days of PLEX. This time they will install a tunneled catheter that can remain in place for several week. After the initial few day inhospital, I will go back every two weeks for a one day, outpatient exchange.

I had another bad headache this morning. Today was the first Easter Sunday I missed at church.

Vanderbilt Appoint Update

2011-04-14T09:05:00.001-04:00

I had a really good visit with Dr. NR at Vanderbilt yesterday. She is the one who did the workup on the possible lymphoma last year. The good news is that these lumps are caused by all the prednisone I have been taking. Nothing to worry about!

Rough Sunday

2011-04-11T06:50:00.000-04:00

Sunday was not a real good day for me. Lots of nausea and a bad headache. Feeling some better today. Appointment with Chattanooga Pulmonologist today. Appoint with Hematologist/Oncologist at Vanderbilt on Wednesday to check the lumps in my arms.

Thank You!

2011-04-08T12:59:00.003-04:00

Thanks to everyone who made this a special birthday for me. It was great.

I am using the Bi-PAP machine and it help me breath out at night. But overall, my breathing is no better. Any activity causes me real problems. I gasp for breath, my heart rate goes up, I gasp more, heart rate goes higher. It is a vicious cycle.

I have developed a lump in my left arm above my elbow and under my right arm (where three lymph nodes were surgically removed last year.) I have an appointment at Vanderbilt Hematology/Oncology on Wednesday, April 13 to check them out.

Appointment Update for March 30, 2011

2011-03-31T14:08:00.005-04:00

I had a good, long appointment at Vanderbilt with my neurologist yesterday. We made some changes to my medication to help with weight and pain.

The main focus of the appointment was on my breathing issues. The plan right now is to swap me from a CPAP to BI-PAP machine. That will be completed this week. That should take some stress off my diaphragm. In about three weeks, I will have a phernic nerve study. This is the neve that controls the diaphragm. That should help clarify what is happening with my lungs.

Also in about three weeks, I will probably undergo another five days of inpatient plasma exchange at Vanderbilt. Then I will have one-day plasma exchange every other week. The goal again is to lower my immune system and stop by condition from worsening.

I will also have the lump in my arm checked soon.

Cytoxan chemotherapy is NOT for me. That is great!

Thanks for the prayers

Kerry

Condition Update, Six Weeks after 2nd, 4 day series of IVIG

2011-03-27T19:13:00.008-04:00

My disability application through Guidestone/Unum has been approved. The final effective date will be April 6, 2011.

My appointment at Vanderbilt is this Wednesday. We are schedule to address more aggressive treatment. I will update my blog after the appointment.

The December 2010 and February 2011 IVIG treatments did not improve condition. In fact, the IVIG gave me terrible headaches that I still deal with on occasion. I really do not want to do IVIG again since it was not that effective. More pain than gain!

My current symptoms are about the same as they have been with these additional issues.

(1) Breathing continues to be a major problem. I had an appointment with my Primary Care Physician last Wednesday. He listened to my lungs and did an EKG. Both were normal. I had an appoint with my local Pulmonologist on Friday. He listed to my lungs, did a chest x-ray, and simple breathing test. His conclusion is that muscle weakness not my lungs is my problem. I had another sleep study to see if a BI-PAP rather than a CPAP would be helpful. I go back to him April 11 for the results.

(2) Swallowing liquids is difficult at times.

(3) I am noticing a lot more involuntary movement in my arms and legs. They jerk own their own at times. I have a lot more leg cramps than ever.

(4) For the past three weeks, I have experienced piercing pain in the bottom of my heels at night. It feels like someone driving an ice pick up through my heels into my legs. Right leg more than left.

(5) For the past week, I have had sharp, burning, electrical pain in the outside of my thighs. Right leg more than left. Pain is excruciating.

(6) My forehead is sweating a little more when I am hot. I have also noticed a "clammy" feeling at night, but I am not really sweating. I wake up thinking I am soaked, but I am not.

(7) The lump in my left arm and under my right arm are still present.

(8) I am occasionally having trouble choosing the right words to say or selecting the correct word for objects. I also am not "sharp" in my thinking right now. I hope this is from all the medication to combat the headaches.

Keep us in your prayers.
Kerry & Cathy

This next section is very long. I have included it for documentation since my insurance companies and some medical professionals follow this blog. It compares my symptoms from January 23, 2010 through March 28, 2011.

Whole Body Involvement

January 23, 2010: I feel my entire body is being effected to varying degrees by whatever this condition is.
March 21, 2010: This has not changed.
April 04, 2010: Part of my nervous system is improving, parts are staying the same, and nothing is getting worse.
July 24, 2010: Some symptoms seem to be worsening.
October 01, 2010: This has not improved.
December 01, 2010: My whole body is still effected.
January 17, 2011: This has not changed at all. From my perspective, I am still slowly worsening.
March 28, 2011: Same.

Needle Pricks

January 23, 2010: I do not feel needle pricks over almost my entire body. I can feel pressure and touch, but not sharpness.
March 21, 2010: This has not changed.
April 04, 2010: I can feel a few more needle pricks, enough that I just do not stick my body any longer as I once did. I feel needle pricks over about 10% of my body now.
July 24, 2010: I am losing the ability to feel needle pricks again over my entire body.
October 01, 2010: This has not improved. I only feel needle pricks on about 15% of my body.
December 01, 2010: I slightly feel needle pricks on less than 10% of my body.
January 17, 2011: This has not changed. I slightly feel needle pricks on less than 10% of my body.
March 20, 2011: Same.
Tingling
January 23, 2010: I tingle all over; legs and arms more than the rest of my body. The intensity of the tingling can vary.
March 21, 2010: I still tingle all over but to a lesser extent. My arms do not tingle nearly as much as they did.
April 04, 2010: This has not changed since March.
July 24, 2010: I am tingling more and more. Over the last few weeks, this is much worse during the night and often wakes me up from sleep.
October 01, 2010: This may have worsened. I still tingle and the are a few areas that feel very numb. On occasion, it seems as if I do not feel my body at all. It's like I am detached from my body.
December 01, 2010: This continues to worsen slightly. I still tingle and there are a few increasing areas that feel numb. On occasion, it seems as if I do not feel my body at all. It's like I am detached from my body.
January 17, 2011: More tingling and numbness over almost my entire body. Major pain area is in my knees to feet on both legs and forearms to hands on both arms.
March 20, 2011: Same.
Tremors
January 23, 2010: I feel shaky and trembly from the inside-out almost all the time, but it does not feel like hypoglycemia. Another person on a neuropathy website described the feeling like 'vibrating all over'.
March 21, 2010: I still feel trembly, but not as intense.
April 04, 2010: This has not changed at all since March. I may have to live with the tremors.
July 24, 2010: The tremors and shakiness have increased a little.
October 01, 2010: This has not improved. I have developed an occasion jerk in my left arm and both legs on occasion.
December 01, 2010: I still have slight tremors and occasional jerks in my arms and legs. I feel trembly all of the time.
January 17, 2011: My tremors seem to be increasing in my left arm and legs. The tremors are more pronounced with activity.
March 20, 2011: Continuing to increase.
Shortness of Breath
January 23, 2010: I have trouble climbing stairs and getting out of chairs. It feels like I have a lack of strength in my knees and legs. I become short of breath easily with almost any activity. It is then difficult for me to catch my breath.
March 21, 2010: I can climb stairs better, but I am still having trouble catching my breath.
April 04, 2010: This is improving slightly. I still have trouble catching my breath at times.
July 24, 2010: This has worsened since April. I was tested for Primary Pulmonary Hypertension. The heart catheterization was negative for PPH. Breathing and variable heart rate are major problems for me now.
October 01, 2010: This is definitely worse.
December 01, 2010: I am very short of breath. I become short of breath easily with almost any activity. It is then difficult for me to catch my breath.
January 17, 2011: Shortness of breath is still a major problem for me. It severely limits my walking and daily activities.
March 20, 2011: Much Worse.

Exhaustion

January 23, 2010: I feel tired and exhausted all of the time. I never get rested, stop tingling, or aching.
March 21, 2010: This has not changed too much. I am a little more rested.
April 04, 2010: I feel stronger and more rested. I think this is improving with time.
July 24, 2010: This has worsened some. The breathing problems have caused me to feel not as rested as in April. I become exhausted with very little exertion and my heart rate usually elevates quickly.
October 01, 2010: This is definitely worse.
December 01, 2010: The exhaustion improved after the PLEX in October, but the effects are wearing off and I become exhausted easily now.
January 17, 2011: The exhaustion has returned after the PLEX. Even the IVIG in December did not help the exhaustion. Combined with the breathing problems and weakness I am very limited in what I can do.
March 20, 2011: Same.

Weakness
January 23, 2010: I feel extremely weak and cannot do what I once did. When I try to do some physical activity for a length of time, my body just seems to stop trying.
March 21, 2010: My physical strength is slowly improving. I am still a long way from recovering my full strength, but I can tell some improvement.
April 04, 2010: My strength is continuing to recover. I can tell my muscles are way-out-of-shape and will take some time to rebuild. I still am not pushing myself too much at this point in time, but I am progressively increasing my activity level.
July 24, 2010: My strength has reached a plateau and fades quickly with use.
October 01, 2010: This is definitely worse.

December 01, 2010: My strength improved after the PLEX, but is declining again.
January 17, 2011: I weaken easily again. The Mestinon only lasts for about 3 1/2 hours.
March 20, 2011: Same.
Walking and Balance
January 23, 2010: I have trouble walking and keeping my balance. I really have to concentrate on walking to make my legs move. Walking any distance (a few blocks) is a real problem.
March 21, 2010: My walking and balance is better. I can walk a little faster and a little further. My balance seems better, too.
April 04, 2010: My balance and walking continue to improve. I can walk faster and further than just a few weeks ago. I actually worked in my yard a little on Friday of this week.
July 24, 2010: I cannot walk as far, but may be due to my shortness of breath.
October 01, 2010: This is similar to July. I use a walking stick if I have to walk any distance. I now have a disabled parking permit.
December 01, 2010: My walking gate is not as smooth. I feel like I limp. I still use a walking stick for any long distance. Walking any distance, such as hospital visitations, is a real problem for me.

January 17, 2011: Walking has not improved. I have fallen three times since early December 2010 because my legs were asleep. Because my I feel numb and tingle, I cannot always tell when my legs are asleep.
March 20, 2011: Same.
Aching
January 23, 2010: My legs ache from my upper-thighs down. My arms ache from my elbows down.
March 21, 2010: My legs still ache very much. My arms are not aching at present.
April 04, 2010: This has not changed since March.
July 24, 2010: My arms and legs are aching. My ankles and feet have more burning pain and numbness.
October 01, 2010: This has not improved.
December 01, 2010: I ache more now than before the PLEX in October. Both arms and legs. I also have more burning pain now than before and the burning area is increasing in size.
January 17, 2011: My total pain level is increasing, both burning and aching.
March 20, 2011: Same.

Autonomic Nerves

January 23, 2010: The condition is now definitely evolving to include my autonomic nerves. The autonomic nerves control all bodily functions including breathing, heart rate, kidney function, sweating, etc.
March 21, 2010: This has not changed.
April 04, 2010: This has not changed.
July 24, 2010: This has worsened.
October 01, 2010: This has not improved.
December 01, 2010: This has not changed.
January 17, 2011: This has not changed.
March 20, 2011: Same.

Hypohidrosis
January 23, 2010: I have greatly reduced sweating. I basically only sweat on my forehead on rare occasions. If I have on a lot of clothing and if I am very hot, I may sweat under my arms a little. I normally have sweated heavily for most of my life.
March 21, 2010: This has not changed.
April 04, 2010: On Sunday, March 28, 2010, I actually sweated while preaching. Wow! Great! This is a major improvement. It may have been a combination of activity and the hot stage lights, but I really sweated on my forehead. I may have develop some very light sweating under my arms, but it is difficult to tell for sure. As mentioned in an earlier post, I feel like I might be sweating at times, but moisture is not present.
July 24, 2010: This is the same as April.
October 01, 2010: This has not improved. I do sweat a little more on my forehead because of all the medication.
December 01, 2010: I basically still do not sweat. The exception is an occasional "hot flash" about 30 minutes after taking the CellCept. I will sweat for a few minutes then.
January 17, 2011: This has not changed.
March 20, 2011: Basically the same, but I feel "clammy" at night. Some additional sweating on forehead with exertion.
Body Temperature Regulation
January 23, 2010: I am almost constantly cold. In the past, I was never cold. But my body seemed to change a few years back. I am colder this year more than ever.
March 21, 2010: This has not changed.
April 04, 2010: I still feel cold most of the time. Strangely enough, the hotter weather is really beginning to bother me. I guess this is connected with the hypohidrosis (reduced sweating). I must be careful not to overheat. This is still part of my autonomic nervous system that seems to be most affected now.
July 24, 2010: This is the same as April.
October 01, 2010: This has not changed.
December 01, 2010: I can still overheat if I am not careful. Strangely enough, I still feel cold but the cold does not really bother me. I do not think my body is registering the cold temperatures properly.
January 17, 2011: This has not changed.
March 20, 2011: Same.

Appetite and Weight

January 23, 2010: I feel constantly full and am almost never hungry. I could go literally a day without eating. My current weight is 257 lbs, down from 282 lbs without trying to lose weight.
March 21, 2010: I still feel full and have no appetite. I force myself to eat and have been able to keep my weight around 260 pounds. I did have a lot of fluid retention from the plasmapheresis.
April 04, 2010: This has not changed since March.
July 24, 2010: I have had steroids a couple of times since April for various reasons. They always make me hungry and I eat. I also think my body is retaining fluids. My weight is about 270 currently.
December 1: 2010: Weight gain is a problem. Still feel full,but not really hungry. Diet has not changed from what it was earlier this year.
January 17, 2011: My weight is still increasing due to medication.
March 20, 2011: Weight stabilized around 315.

Photo-sensitivity
January 23, 2010: Sunlight, or bright spot-lights, make my face feel like it has been sunburned or like ants are biting me. I avoid sunlight.
March 21, 2010: This has not changed.
April 04, 2010: This is still a real problem for me. The last few days have been warmer and sunny and I have tried to spend more time outside. Sunlight hurts my skin. I feel like I have an instant sunburn. I have a dark-complexion and sunlight has never bothered me before. Even when I would sunburn, It would quickly turn into a tan. Not anymore! I have not tried sunblock—I don't like the idea of chemicals on my skin. So for now, I cover up when I go outside. Strong spot or flood lights have the same effect. It is almost a heat/infrared sensitivity.
July 24, 2010: This has not changed since April. I did go out in the sun long enough to get a sunburn. Strangely enough, the sunburn itself did not hurt.
October 01, 2010: This has not changed.
December 01, 2010: I still feel pain from sunlight.
January 17, 2011: This has not changed and I avoid sunlight.

March 20, 2011: Same.
Orthostatic Hypotension
January 23, 2010: My orthostatic hypotension readings at 9:30 AM, two hours after eating were as follows:
Lying down: 146/81 pulse: 59
Standing one minute: 133/83 pulse: 102
Standing three minutes: 126/83 pulse: 86
Standing five minutes: 132/86 pulse: 84
Standing ten minutes: 130/88 pulse: 102
March 21, 2010: I did notice an increase in my pulse rate since the treatments. Before, my pulse would be in the 50's while resting. Last week my pulse rate was in the upper 80's while resting. On Saturday and today, it seems to have dropped to the upper 70's while resting. I also did a quick check of my blood pressure this morning. My readings were:
Lying down: 157/74 pulse: 67
Standing one minute: 126/69 pulse: 103
Later, I did the full twenty minute orthostatic hypotension test. My readings were as follows.
Lying down: 157/76 pulse: 83
Standing one minute: 141/83 pulse: 107
Standing three minutes: 139/89 pulse: 108
Standing five minutes: 146/90 pulse: 109
Standing ten minutes: 148/93 pulse: 120
Standing twenty minutes: 134/95 pulse: 126
April 04, 2010: I did the full twenty minute orthostatic hypotension test on Saturday, April 3, 2010, at 10:00 AM, two hours after eating. My readings were as follows.
Lying down: 150/77 pulse: 70
Standing one minute: 111/71 pulse: 130
Standing three minutes: 138/89 pulse: 114
Standing five minutes: 141/89 pulse: 115
Standing ten minutes: 141/93 pulse: 106
Standing twenty minutes: 134/87 pulse: 131
Sitting down five minutes later: 148/85 pulse: 82

I still have indications of orthostatic hypotension with a large drop in BP, and increase in pulse rate at one minute this morning. My overall resting pulse rate is dropping back to normal rates for me.

July 24, 2010: My heart rate and blood pressure have been erratic for several weeks. There is a connection to my breathing problems. Orthostatic hypotension is still present. I did the full twenty minute orthostatic hypotension test Tuesday, June 30. My readings were:
Lying down: 149/86 pulse: 75
Standing one minute: 107/81 pulse: 127
Standing three minutes: 128/90 pulse: 113
Standing five minutes: 138/88 pulse: 115
Standing ten minutes: 142/92 pulse: 115
Standing twenty minutes: 125/97 pulse: 127
Sitting down twenty minutes later: 139/88 pulse 83

December 01, 2010: I have had a few instances of OH since the PLEX. Nothing unusual or recorded. My blood pressure has tended upward.
January 17, 2011: Heart rate still fluctuates easily from low 50's to 120. My blood pressure is slowly increasing because of medication and weight gain. Currently it runs 190+/90+.

March 30, 2011: Blood pressure became a major issue. It went as high as 200+/100+ in February. I started on Lisinopril and my pressure is under control. Too much medication and I have orthostatic issues again. Currently BP runs 145/85.
Vision
January 23, 2010: My vision changed somewhat in July 2009. My peripheral vision field is much less than normal for me.
March 21, 2010: I have noticed some improvement in my vision. My peripheral field is increasing some. It is still not back to normal, but is decidedly better.
April 04, 2010: My peripheral vision is almost back to normal. I have more than a 180 degree field of vision now. This is more normal for me.
July 24, 2010: My vision blurs from time to time.
October 01, 2010: This is worsened. My eyes will physically hurt and my vision will blur.
December 01, 2010: This is a major problem for me right now. Eye pain, blurred and double vision on occasion. I do not drive at night because of my vision.
January 17, 2011: My ophthalmologist visit did not reveal any "eye" problems. The double vision and blurred vision are consistent with Myasthenia Gravis. I still have a lot of pain and aching when I move my eyes. My eyes hurt all the time.
March 20, 2011: Same.

Tenth Cranial Nerve Palsy
January 23, 2010: I was diagnosed around 2005 with a partial CN10 palsy that effects my throat and gag reflex somewhat. I do not feel hot or cold on the interior left of my throat when I swallow. I have not had any trouble swallowing, but I do not feel the temperatures.
March 21, 2010: This has not changed.
April 04, 2010: This has not changed.
July 24, 2010: This has not changed.
October 01, 2010: This has not changed. I did eat a slice of jalapeno pepper (rare for me) the other day. I could feel the burn on the right inside of my throat, but not on the left.
December 01, 2010: No change.
January 17, 2011: No change.
March 20, 2011: Same.

Voice

January 23, 2010: I have noticed my voice getting weaker and raspy over time. I pastor a church and I preach four times a week (three times on Sunday). My voice is becoming a real concern for me.
March 21, 2010: This has not changed.
April 04, 2010: My voice seems better to me.
July 24, 2010: My voice is more like January 23 again.
October 01, 2010: This has worsened. My Uvula is beginning to flop and touch the back of my tongue when using my voice.
January 17, 2011: This continues to slowly worsen. My voice get weak with use and it is difficult to engage in sustained conversation. I had to shorten my sermons over the last few weeks because my voice would not last.
March 20, 2011: Same, except I am not preaching now.

Jaw/Temple Pain
January 23, 2010: My jaw muscles hurt when I eat anything hard, such as M&Ms^®.
March 21, 2010: There is no change here. I like M&Ms^®, but since it hurts to eat them I have opted for cheese cake instead.
April 04, 2010: I still opt for cheesecake, when Cathy lets me eat it.
July 24, 2010: I still have pain in my left jaw, but now the pain has shifted more toward my left temple and really hurts. I am also experiencing pain in the bridge of my nose and slight pain in my right temple. I cannot wear my glasses at present because of the pain. My vision changes somewhat daily.
October 01, 2010: The severe pain has turned into generalized jaw pain.
December 01, 2010: This has not changed.
January 17, 2011: This has not changed and I notice it most in the morning when I have not had my Mestinon. The more I chew, the more I hurt.
March 20, 2011: Same.

Breathing Problems

2011-03-25T15:33:00.002-04:00

I have had a difficult time breathing this week. My PC Dr. said my lungs are clear and my EKG is normal. My Pulmonary Dr. said my lungs are still clear and that my problem is definitely my respiratory muscles. I will undergo another sleep apena test tonight (03/25) to see if I need to upgrade from a CPAP to a BIPAP. A BIPAP works with different in and out pressure to help people with neuro-muscular disease breath easier.

My next blog with be after the Vanderbilt trip on next Wednesday.

Blood Pressure

2011-03-16T18:01:00.005-04:00

My blood pressure has settled down to more normal levels now. Instead of 200/100, it is now 135/85 with medication. But my orthostatic hypotension (OH) problem is back. OH is when blood pressure drops when I stand. Several times this past week I have became very faint and dizzy when I stood up. The solution--stand up very slow and give my blood pressure time to adjust.

My breathing continues to worsen and my voice cracks from time to time. This all is connected since myasthenia gravis effects these groups of muscles.

Two weeks from today I have my next appoint at Vanderbilt. Yea!

Sunday Update, March 13, 2011

2011-03-13T21:43:00.000-04:00

I was able to go to church today for the first time since January 10. What a great day of worship and wonderful message by Bro. Jim. It was good to be in the House of the Lord. Thanks to everyone for their continued prayers.
I am still fighting the headache. Every time I stop the medication the headache comes back. So I will just float on the clouds for awhile longer. Hydrocodone, Promethazine, and Benadryl are wonderful things when needed.

FBC Newsletter, March 2011

2011-03-09T20:29:00.001-05:00

Since my last newsletter article, I underwent a second round of four-day IVIG infusion through the outpatient infusion center at Erlanger. IVIG is good antibodies collected from thousands of individuals who give blood. The good antibodies are then cleansed and prepared for people who are suffering from auto-immune diseases. The theory is that the good antibodies will attack and destroy the bad antibodies in my body. So far, the IVIG has not been effective for me.

The procedure itself went OK, but I had a reaction after the treatments stopped. It was the worst series of headaches I have ever had in my life. For the last two weeks, I have taken tons of Hydrocodone, Promethazine and Benadryl. Finally the headaches subsided after I increased my prednisone. I am on my second day without a headache now and hope they stay away.

My next appoint at Vanderbilt is March 30. From recent conversations with my neurologists, he believes it is time for much more aggressive treatment since I am not responding at present. Right now I am not sure what direction this will take. He has mentioned doing the plasma exchange (where they drain and replace the liquid in my blood) once a month or even chemotherapy. I have to wait for my appointment and evaluation before future treatment is decided.

Thanks again for your support, cards, and prayers. I believe you will find that God will bless you for blessing us. There is something important and powerful about a church that takes care of its ministers. You are doing that! In a very real sense, you are the power of God working in my life at this point and time. May God bless each of you as you have blessed us!

Keep the staff in your prayers also. They continue to do excellent among you!

IVIG Update March 2, 2011

2011-03-02T15:16:00.004-05:00

It has been over a week since I completed the second series of IVIG treatments. The first round was in late December 2010 and the second round was in mid-February 2011. I should be near the maximum effect of the IVIG treatments at this point. So how am I feeling?

My headache seems to have finally stopped last night. I very seldom have headaches, so its fairly clear the headache was a reaction to the IVIG. This has been the only side-effect I have felt.

Both IVIG and PLEX help my ability to walk--for a few weeks. Right now I am not limping as badly and I feel a little more stable on my feet. This is the biggest area of improvement I see from my treatments, but in the past any improvements have been short lived. I hope that my improved walking will last more than a couple of weeks. Although I am walking a little better I still am very limited in the distance I can walk.

My breathing is not any better. Almost any activity leaves me breathless. At times I still feel like there is a huge weight pressing down on my chest. I am concerned about my breathing issues.

My vision is not any better either. My Small Fiber neuropathy is about the same. I am still losing hair on my legs and stomach. The hair on my head is still turning darker (but I am not complaining).

I have noted in previous blogs and videos about using situps as a measure of my medications effectiveness against MG. As of this week there is no difference in my situps from previous videos. I cannot do a situp without Mestinon. I can do one situp thirty minutes after taking Mestinon. At two and one-half hours, I cannot do a single situp.

Let me share an example of what happens when I attempt an activity. Last evening we ate supper at my daughter's. After supper she wanted me to replace her shower head. I have changed-out dozens of shower heads over the years. Its a three-minute job. Loosen and unscrew the head, replace with the new head and screw in place, then tighten. No problem--I'll change it out in no time. About fifteen minutes later I finished the job.

Why so long? Holding my arms up above my head and using them for any amount of time makes them almost useless. They tire, ache, tremble, shake. So I adapt my strategy and work a few seconds and rest, work a few more seconds and rest. Oh yes, I try to catch my breath while resting. I am still stubborn and refuse to be defeated by a shower head. I won the battle, but suffered in the process.

This is what life is like with Myasthenia Gravis.

Quick Update

2011-02-23T11:35:00.001-05:00

Today is Wednesday, February 23. The IVIG treatment seems to have helped my walking somewhat. That is good since I feel more steady on my feet. But, my breathing and vision are no better--yet!

I have had a headache ever since completing the treatments. I have been trying advil, tylenol, hydrocodone, etc. for the pain. It helps but the pain comes back. My neuro has prescribed benadryl and promethazine to counteract the reaction to the IVIG. My headache is a reaction to the good antibodies.

Well, I have just taken the meds, so it is bed time. Taking benadryl and promethazine I will sleep, and sleep, and sleep.

Thanks again for your prayers and support!

Good night!

Headache

2011-02-19T22:19:00.004-05:00

The IVIG headache is getting worse tonight. This happened last time also.
Oh well, time for hydrocodone.

Hope everyone has a good day a church tomorrow.

IVIG Complete

2011-02-18T22:19:00.002-05:00

I finished my fourth day of IVIG infusion today. Things went well with the only side effect of a headache. Thanks for your continued prayers.

Three Days of IVIG Complete

2011-02-17T14:12:00.003-05:00

I have completed three days of IVIG with no problems or side effects. That is great. I will complete the treatment on Friday of this week. Now I am praying that it will be very effective on my condition.

IVIG is more precious than gold. My treatment in December (one dose of medication given over four days) was only $59,012. That works out to almost $3,700 per hour of infusion.

Boy was I wrong about what I thought the cost would be!

I will probably do a video one day next week to talk about the effects of IVIG.

Thanks for keeping me in your prayers.

IVIG Starts 02-15-2011

2011-02-14T20:23:00.001-05:00

The insurance problem is fixed. I will begin four days of IVIG on Tuesday, 02-15

UPDATED IVIG Delay or NOT!!!!

2011-02-11T09:51:00.006-05:00

Well I was scheduled for IVIG next week, but my insurance will only pay for one treatment every three months. Something may get worked out for next week, but it looks like I will have to wait until March 21. These treatments cost about $12,000 for 4 days infusion of one dose of medicine.

Update 02-11-11 8:15 PM. It looks like my IVIG may be on again. The first approval was for 4 total treatments, so I should be good to go. I will know for sure Monday.

Second Round of IVIG beging February 15, 2011

2011-02-09T15:50:00.003-05:00

I just received notice about beginning my second round of IVIG next week at the Outpatient Infusion Center at Erlanger Hospital. I am scheduled for treatments Tuesday through Friday. I am really ready for this to see if it helps my breathing and vision.

Newsletter Article for February 2011

2011-02-09T15:14:00.003-05:00

It has been about one month since I began my medical leave. I have focused on resting and recovery. It is difficult for me to really do nothing, but I am trying to comply. I am on two additional medications at present and will probably undergo another round of IVIG soon. Please continue to keep my recovery in your prayers.

I hear good reports about the church--and I am excited. I really appreciate the staff and the excellent job they are doing in my absence. Continue to keep them in your prayers as they seek the Lord's leadership.

Cathy and I thank each one of you for your support, cards, and prayers during this time. We could not make it without such a great support system. We truly thank you from the bottom of our hearts. May God bless each of you as you have blessed us!

Kerry & Cathy.

2011-02-09 Hair Changes

2011-02-09T11:52:00.000-05:00

2011-01-21 Myasthenia Gravis Update

2011-01-22T17:54:00.001-05:00

2011-01-21 Effects of Mestinon

2011-01-22T17:54:00.000-05:00

Extended Medical Leave Begins

2011-01-21T09:26:00.007-05:00

It has been a while since I blogged, so this will be a long blog. I also plan to do another documentation video today, so check my YouTube Channel.


Medical Leave and the Disability Process

As of January 5, 2011, I began my extended medical leave as Senior Pastor of Ringgold First Baptist Church. My life has significantly changed. My thanks to the church for allowing me this time of healing.

I spent a couple of days preparing all the paperwork for my disability insurance. You can probably tell that I like to document things and events. I got into the habit of doing so while working on my doctorate. So, by the time I completed the paperwork and attachments I had 36 total pages.

Things are now in the disability insurance company's hands and I am waiting to hear from them. I will keep the progress posted on my blog.


What I Am Doing Now

Last week, because of the snow storm and the grand-kids being out of school all week long, I ran "Big K's daycare and dog sitting service." I am glad school is up and running again. The kids were great and gave no problem. Bethany really watched Alyssa and we ate and watched movies.

This week I am at home by myself (except for the dogs). They sleep most of the time--and so do I--so we are a good team. I am really focusing on resting and recovering.

I do stay active to keep my body moving. I can wash and dry towels and load the dishwasher. I don't do windows or much of anything else. I try to work on supper if I have the energy.

Most of the time, I rest. I have not been working on preparing sermons or doing a lot of thinking. I have not even worked on the blog much until today.

Rest and Recovery is Key for Me!


My Current Diagnoses

Significant Generalized Autoimmune Myasthenia Gravis (refractory): The junction between my muscles and nerves are damaged. My muscles do not receive enough signal from the nerves to respond properly resulting in muscle weakness. This condition effects my entire body, but seems to have the greatest effect on my eyes, voice muscles, and breathing muscles. My breathing muscles are currently working at about 40% of normal capacity. I have great difficulty breathing and my heart rate is increased to keep oxygen flowing through my blood. Extreme fatigue is also a constant companion. My MG has not been significantly improved with PLEX, IVIG, Mestinon, or prednisone.

Severe Small Fiber Neuropathy (whole body): My Severe Small Fiber Neuropathy falls better under the diagnosis of Inflammatory Small Fiber Predominat Polyneuropathy (this is the term I should use according to Dr. CL). Small nerve fibers transfer sensations such as hot, cold, pain, and pressure from the skin to the nervous system. I have lost the ability to feel sharp pain and have reduced sensation to hot and cold over my entire body. Small fiber neuropathy also causes me to tingle and feel numb over most of my body. At times, parts of my body feel like they are asleep. I have fallen three times since early December 2010 because I stood up not realizing my legs were really asleep. I also experience burning pain in my hands and feet.

Autonomic Neuropathy: Autonomic nerves control all bodily functions such as your heart, lungs, digestion, kidneys, sweating, blood pressure, etc. I have trouble regulating my body temperature. I basically stopped sweating--except for occasions when caused by medication. My blood pressure is subject to sudden drops when I standup. Lately, I have been dealing with hypertension and now on new medication to help regulate my blood pressure. My heart rate varies from slow to fast without reason. Autonomic neuropathy can be a subset of small fiber neuropathy.

Slight Sensory-Motor Axonal Neuropathy: The Slight Sensory-Motor Axonal Neuropathy (though diagnosed and indicated through EMG/NVC in December 2009) is no longer an issue. Any similar/lingering symptoms are connected with the Inflammatory Small Fiber Predominat Polyneuropathy. From my perspective, the first round of PLEX really made significant improvement in this condition. This is no longer considered a current diagnosis.


Diagnostic Procedures, Tests, and Treatments

Each of these procedures was performed to identify or exclude possible causes of my various symptoms. Diagnosing me involves a lot of exclusions.

Here are the procedures and test I have had over the last two years: Abdominal Ultrasound, Colonoscopy (x2), CT Scan, CT/PET (x2), ECG/EKG (many), Echocardiogram,, EGD, Emergency Room Visits (x3), EMG/NCV (x3), Fine Needle Axillary Lymph Node Biopsy, Glucose Tolerance Testing, MRI, Nuclear Stress Test, Physical Therapy Evaluation (x2), Pulmonary Function Tests (x4), MVV, Cardiopulmonary Exercise Test, Right Axillary Lymph Node Biopsy (three surgically removed), Right and Left Heart Catheterization, Single Fiber EMG, Sleep Apnea Testing, Vocal Cord Endoscopy. And don't forget gallons and gallons of blood work.

I have had the following treatments: Tons of medication, Ten sessions of Plasma Exchange (PLEX), Five days of IVIG.


Thanks

Thanks again for your prayers and support. Cathy and I really appreciate it. Soli Deo Gloria!

Eight inches of Snow on January 10, 2011

2011-01-10T12:09:00.001-05:00

Click Here to View my January 2011 Snow Video

RFBC Newsletter January 4, 2011

2011-01-04T19:51:00.002-05:00

Dear Church Family:

By now you should be aware that I will be taking a medial leave for a few months in order to let my body heal from all that is happening to me. My goal is to rest, recover, and be able to return to work. Wednesday, January 5 will be my official last day at work.

I will speak in the 11 AM worship service on January 9. There will only be one service on January 9. During my leave, I will not be at church every Sunday--if I am here I will be greatly tempted to do things and that will not encourage me to rest. I will keep my blog up-to-date and you can see what is happening with me there (http://krbunn.blogspot.com).

This is a medial leave and not an interim situation. As such, I am still pastor and ultimately responsible for the church. I have asked Rev. Jim Bailiff to preach through March. He has graciously agreed. He will also be leading the evening worship. Rev. Brant Olivarri will continue his focus on Family. He (and others) will be making hospital visits as needed. The other church staff do an excellent job and they are gifted in their calling. The deacons will be taking turns leading prayer meeting on Wednesday evening and ministering to their deacon families. The church is in good hands will I am on leave.

I want to share a recap of several items from last Sunday's sermon with you so that everyone will know the direction of the church for the next few months.

1. Stay the Course: Continuity is important. This is not the time for any major changes.

2. Be Ready to Adapt: Of course, me not being here requires some adaptation. I have announced no early service during the month of January. This will be helpful to me on January 9 and will be helpful to Rev. Bailiff for the rest of January.

3. Support Your Staff: They are all called and gifted by God for service to His church. Pray for and encourage them.

4. Become More Involved in the Ministry of the Church Yourself: Each and every one of your is a minister of God. Pray for each other. Encourage each other. Invite people to church. Think positive! Be positive! Talk positive! Be faithful in your attendance and giving. Truly love one another.

5. Continue to Pray for Cathy and Me

Merry "White" Christmas

2010-12-25T13:11:00.003-05:00

This is a first for us. Hope everyone has a great Christmas.

Medical Leave

2010-12-19T18:37:00.004-05:00

This morning I announced I will be taking an extended medical leave beginning January 2010. That was a very hard thing for me to do. But, my neurologists says it is time to stop and let my body have a chance to heal. I am--at least I will try to stop.

I have fought long and hard, taken tons of medication, experienced 2 - five day plasma exchanges, and begin 4 days of IVIG on December 20.

I am not giving up! The goal now is to continue aggressive treatments, focus on rest and healing, get better and eventually go back to work!

Thanks for all your support and encouragement. I hope each of you have a great holiday season.

IVIG Update

2010-12-14T07:31:00.001-05:00

Still waiting on final insurance approval before starting IVIG. I hope to begin Wednesday. I will post an update when I get final word

Good Article Link about Myasthenia Gravis

2010-12-10T08:15:00.000-05:00

Click Here

Appointment Update

2010-12-02T07:28:00.002-05:00

Here is a quick update of my Vanderbilt appointments yesterday.

The cardiopulmonary function test was very tiring. I was connected to an EKG and my breathing was all monitored through a tube. I rode an exercise bike until I could go no further--about 4 minutes of actual riding. I do not know the results of the test yet. But boy was I exhausted after.

They were able to work me in to see Dr. Lee yesterday. My myasthenia gravis is still not under control. Things would be simpler to deal with if I only had MG, but I have the other neurological issues as well.

The next step is to begin a series of IVIG infusion before the end of 2010. I can have this done as outpatient at Erlanger--that's good news. It looks like I will eventually have 2 series of 4 or 5 infusions. I don't know the date yet!

I came down with the "bug" so I am at home trying to get better!

Vanderbilt on Wednesday, December 1

2010-11-30T14:40:00.006-05:00

Back to Vanderbilt tomorrow (12/01/10) for a cardio-pulmonary function test and appointment with neurologist. I'll report later.

Correction: The neurologist was just changed to Monday at 10 AM.

I had a routine x-ray on my last visit to Vanderbilt. I did not expect it to show anything. But it surprised me this time. The doctor noted some evidence of granulomatous disease present. It could be any number of things, but is probably just the result of some infection. I will find out more about this tomorrow.

Thankfulness

2010-11-25T07:43:00.005-05:00

Thankfulness Blog

KRB -- I am thankful for all the blessing of this past year.

I am thankful for my wife who loves and cares for me. I am thankful for my daughter and her girls and that they are here with us. I am thankful my son has a new job and pray for a good move to Montgomery for them. I am thankful for my church family and their love and support.

I am thankful for the health I have and the hard work of the doctors in continuing to find the right treatment for me. I am thankful for our friends and their support. I am thankful to God for His love, Christ for my salvation, and the Holy Spirit for His daily guidance.

Thanks to everyone who participated in this and reads my blog. I hope I have encourage you, at least a little, this past year.


The following responses were received by email. Some of the people who responded are suffering with Myasthenia Gravis like I am.

D.J. -- I am most thankful for God's love and protection and the tremendous amount of blessings that God pours on me and my family. We are just unworthy and undeserving sinners who constantly disappoint God but yet He never disappoints us!


JW #1 -- I am so thankful for so many thing; among them are salvation, my family and friends and my loving church.


JW #2 -- I am thankful and blessed for my health, our families and the love that we have for each other, a comfortable home, my job, friends, food, my Christian families at church and my pastor and his wife. I am blessed to have known you, Cathy and your family and you and Cathy are such an inspiration in my life.


RC -- I am thankful for many things: I'm thankful for the opportunity to care for two chronically ill parents at home until they passed away. The time I spent with them and the memories we shared made a very difficult time extra special. For the support of family and friends, for without them dealing with this crazy disease would be very difficult. For the wonderful doctors who started testing me for MG when I showed only vague symptoms, and didn't look at me like a have three heads. For my warm home, and food on the table. But most of all I am thankful to God for each and every day. Some days are good some are bad, but every day I spend on earth with my family and friends is a true blessing! Wishing you and your family a blessed Thanksgiving,


RM -- I am thankful for the blessing of living in Ringgold and being welcomed into the family of First Baptist. Praise the lord.


JCW -- There are so many things to be thankful for…..that Christ died for us. Family, Heath, Food, Love, Job, Friends, Loving home


LSM -- Kerry, I wanted to share with you what I read in Daily Guideposts 2010 yesterday. You might or might not want to include it or part of it in your blog on Thanksgiving Day.

In short, Brian Doyle is talking with his 90+ year old mother, who is in the bed with a recent broken hip, which she numbers 15 on what she calls "the old-lady ailment list." She admits she is feeling a little weary of not being able to walk or cook or drive or use much of "the ancient machine the good Lord gave me for a body", but she is quick to list the great things she has "even now that I'm older than dirt." "I have my husband, odd as he is, and five children who have never been arrested, yet, and I have the dearest of friends, and a whopping nine grand-children, and my brain still works, and I make a mean meatloaf, and every day I hear the voices of people I love. Also there are great birds here in Florida and my tomatoes do surprisingly well in this soil. I just discovered two Neville Shute novels I never read, at least one of my children calls me every day, and the sun is out here when it's raining like the dickens where you are and snowing like the Arctic where we used to live, so what's to complain about? Soon enough, heaven, and I'll see everyone I ever loved and ever loved me, and can talk baseball with my day. But what's the rush? This is a glorious world, the one ever, don't you think?"
I know it's long, but thought you would enjoy it, if you haven't already read it. Such a shame everyone doesn't have that kind of attitude!


J.P. -- I am thankful for my Freedom that so many have given their lives , for my wife who has made my life feel so special and has given me so much, for my church family who are so special in my life, but most of all for Jesus Christ who gave his life that I might live.


N.L. -- This year was full of surprises, good and bad. Seems the world is still going thru financial, emotional, and spiritual crisis. our family was no exception.

So I am thankful for the following:

To have my baby-sister survive a full blown bleed out stroke, and 9 months later she is mobile, talking, and is looking forward in being able to use her arm soon.

For bringing all 3 sisters together again.

My daughter-who is still in college, a full time mom, being my sisters aid, and still able to go home and try to have a life.

To my future son-in-law for never complaining when i ask for a favor, and is a good dad and provider, plus he eats anything I cook!

My grand baby who turned 1 and is my bundle of joy!

My two brother-in laws who will come to my rescue if i am stranded or need assistance moving big objects.

To see all new life being born into this family, and seeing it grow in size and strength.

Seeing my Dad more involved with family and spending more quality time with Mom, who has first stages of Alzheimer's.

Having good friends/cousins to be there at a drop of a hat!

Giving me more patience to enjoy the small things in life than stressing over issues i cannot control.

And my most important one, is finding my faith back in GOD.
Sorry for the list being so long but I have lots to be Thankful this year!

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You may also want to read through these two blog threads for more thoughts on Thankfulness

http://www.dailystrength.org/c/Myasthenia_Gravis/forum/10939372-thankfulness

http://neurotalk.psychcentral.com/thread138934.html


Here is a good video from a friend about Thanksgiving Turkeys.
http://www.youtube.com/watch?v=kjJuw891DAk&feature=related

Thanks again
Kerry

Vanderbilt Pulmonology Update

2010-11-18T19:33:00.002-05:00

I met with Dr. Tolle at Vanderbilt Pulmonology today. He is a very nice doctor. He listened to Cathy and me, asked questions, did a thorough review of my records and recommend some additional pulmonary function testing (PFT).

This was the third set of PFT since May/June. The results were all low normal, and a little worse with each successive test. Most of the test involved inhaling and exhaling as quickly as possible. The current test results (although a little worse than August) do not indicate asthma or COPD. My lungs are clear and not congested. That is really good, but does not answer why I cannot breathe.

Dr. Tolle ordered a test I have not had previously. It was a Maximum Voluntary Ventilation test. This test is designed to measure respiratory muscle strength. Preliminary results indicate that my respiratory muscles are working at only about 40% of normal. This is consistent with my Myasthenia Gravis and would explain why I have so much trouble breathing.

More test and an appointment with my neurologist next.

2010-11-17T18:28:00.002-05:00

I have an appointment with Vanderbilt Pulmonology on Thursday (Nov. 18). While updating my medication, I noticed that I could almost open my own pharmacy. This is what I take daily.


I will update the appointment results later this week.

Are You Thankfu?

2010-11-17T07:23:00.004-05:00

I know we all go through some very difficult times and circumstances. I have also observed a sense of "thankfulness" among people who experience suffering. That spirit of thankfulness seems to encourage others.

Since Thanksgiving is next week, would anyone like to share what they are thankful for?

I will do a special blog post on Thanksgiving day that includes your responses about thanksgiving. If you would like to participate in this, send your comments to me at krbunnsr@gmail.com

I will not use you full name, only initials when I post your comments.

2010-11-15 Video and Blog -- October Plasma Exchange Report -- Thirty Days after Exchange

2010-11-15T17:15:00.017-05:00

Click Here to View my 2010-11-15 Plasma Exchange Video

It has been one month since my second series of plasma exchange (PLEX) treatments at Vanderbilt. The treatments did seem to help in some areas, but not in others. Since I have several autoimmune/neurological issues happening at the same time, PLEX may or may not help all my symptoms. The four main diagnoses which fit my symptoms are Myasthenia gravis, small fiber neuropathy, autonomic neuropathy, sensory-motor axonal neuropathy.

My walking, balance, strength and stamina did improve for a time. I have noticed that I am now beginning to walk with more difficulty again. My strength and stamina are also beginning to fade slowly. By noon everyday, I am "wiped-out" and my body forces me to rest. This is not an option, my body makes me stop. I could literally sleep twelve hours a day.

Breathing and chest pain issues were not helped by the PLEX. I give out of breath with any exertion. Even if I feel like doing something (and I always want to do something) my breathing problem stops me. I have a clean report from the ENT and Gastrologist so we know that my problem is not stemming from those areas. I have an appointment with the Vanderbilt Pulmonary Clinic on November 18.

My voice and uvula are still an issue for me. After about fifteen minutes of preaching, it becomes a struggle to keep talking. Two weeks ago, my voice almost stopped on me. This is a real concern since my voice is my living. My uvula still bounces against the back of my throat when I talk.


The Mestionon is still working for about three and one-hour hours at a time. No unmanageable side-effects from any of the medications at this point and time. I will be on 2,000mg of CellCept by this Friday. I think the CellCept is causing the bad, metallic taste in my mouth.

Because of the CellCept and prednisone, I am immuno-suppressed now. To keep from getting sick, I am limiting my hospital visits and avoiding shaking hands at church. That's not normal for me and I hope people understand.

My eyes continue to be a problem but they have not worsened. They still hurt and my vision blurs. I have double vision anytime I try to lie on the couch and watch TV. I can watch OK with one eye closed. I am grateful for large type and computers. Most of my sermon notes are now in 18 or 24 point type just so I can read them.

I have not had any real problem with my blood sugar. The levels are OK when I check--that is when I remember to check. I did have a bad episode of low blood sugar the other morning. My level dropped to 51. That was not fun at all.

My small fiber neuropathy is definitely getting worse. The burning pain has increased to above my ankles (left slightly more than right). I also have occasional burning in my hands. The numbness in also increasing past the bottom of my feet to the sides and top. My entire arms and legs tingle and feel more trembly than a few weeks ago. They also hurt. It is hard to explain the pain. It is not painful to touch, it just aches. The best explanation I have and have used since the beginning is -- it feels like I just ran a marathon! My entire body feels shaky and aches. At times, I feel like I have the flu.

I continue to be insensitive to needle sticks and "sharp" pain over my entire body. I am being careful not to injure myself. But there are time when I see blood and wonder, "where did that come from?"

Thanks again for all your prayers and support.

2010-10-28 Plasma Exchange Report Thireeen Days Out

2010-10-28T18:55:00.007-04:00

Click Here to View my 2010-10-28 Plasma Exchange Report - Thirteen Days Out

It has been thirteen days since I completed my PLEX (plasma exchange). My strength and stamina are still holding on OK. Normal walking, Toe-to-toe and walking on my heals is still OK.


My small fiber neuropathy issues seem to be worse. I hurt, tingle, and burn a little more. PLEX does not seem to help those issues.

I have started on the CellCept and have no side effects. I am grateful!

My eyes are still a problem with pain, blurry and double vision on occasion.

Difficult breathing and chest pain is a constant companion and I think it is getting worse over time. The PLEX did not have much effect on breathing.

Good reports from my ENT and Gastrologist. Through endoscopic examination, they see no problems from their medical area to cause the chest pain and breathing problems. No acid reflux, polyps, infections, irritation, etc. That is good news. No, great news!

The next step is to meet with the Vanderbilt Pulmonologist on November 18 and see what he says. His expertise is in breathing difficulties with no apparent causes. He will have fun with me!

You may notice in the last video that I look slightly less bloated (I did not say I look any better). I am down from 60mg to 30mg of prednisone per day now. I hope the weight keeps coming down too.


Just an update about my book and web sites.

I am hearing from people from all over who are experiencing similar problems. I hope I am helping some of them.

Blog hits: 4,200+
Web site views: 1,280 (Unique Visitors: 419)
YouTube Channel views: 1,446
Paperbacks sold: 108
eBooks sold: 12
(Currently ranked #5 in Kindle Store/Nonfiction/Medicine/Physician&Patient/Healing)

Thanks everyone for making this possible.

2010-1017 Mestinon Effects

2010-10-22T09:48:00.006-04:00

Click Here to View my 2010-10-17 Mestinon Effects Video

One Week after Plasma Exchange in October 2010

2010-10-22T09:48:00.004-04:00

It has been one week since I completed my second five days of plasma exchange (PLEX) at Vanderbilt. It was worth it! Thanks again for your prayers and support.

Several doctors, health care professionals, and health insurance case manager(s) are keeping up with my blog because of the constellation of symptoms and diagnoses. I want to document as accurately as possible what is happening at each stage of my condition in hopes that others may be helped through my experiences.

It would also be great if what I write and document about all my symptoms would "click" with someone, somewhere and they come up with an "Ah Ha!" moment for me.

Tiredness vs. Fatigue vs. Drained

Tiredness is a good feeling after a hard days work. Tiredness is something that is diminished by rest and relaxation. My problem is not tiredness.

Fatigue, in my case, is the inability to really function as desired. The willingness and "want too" is there, but the body just does not respond. Fatigue comes from use. Using my muscles too much just simply makes them stop working correctly. The muscles just do not have enough good nerve signal to function. Fatigue does not feel good and is not diminished much at all by rest and relaxation--although it does help! I still have fatigue, but the PLEX has helped. I do not fatigue as quickly now! That is good.

I do feel very drained after a week in the hospital and five days of PLEX. I really think it sends my body into a type of system shock which lasts for a few days. I think my blood/fluid is beginning to adjust to my body again and I do not feel as drained as I did earlier this week.

Strength vs. Weakness

I can definitely say the PLEX helped my strength. This began to show around the third day of my treatment. I can walk better than I did. Buy my strength is still much less than it was before all of this began in 2009. I still require Mestinon every four hours. Watch my video about the effects of Mestinon (just below this post) and you will see what I am talking about.

My guess is that the PLEX helped the sensory-motor axonal issues as much as the Myasthenia Gravis--maybe even more since my walking is better. I may do a video about my walking this weekend.

Small Fiber/Autonomic Issues

The PLEX did not help the small fiber neuropathy. I still tingle and hurt all over. I still cannot feel needle pricks. I have also had lidocane several times and do not feel the "burn" at all.

Voice

I am still concerned about my voice. I can tell a difference in my volume and clarity. My uvula also is "hanging" lower and bumping the back of my tongue (I ought to be able to make a sermon out of that--or at least a song).

I had an ENT appointment this week and the Dr. did a scope of my sinus and throat. Everything looks good, no suspicious areas and no sign of acid reflux. The problems are all just symptomatic of Myasthenia Gravis. I am grateful for the report.

Breathing and Chest Pain

I still have a lot of problem breathing and a lot of chest pain. I will see a pulmonologist at Vanderbilt in the near future for evaluation. The PLEX did not help my breathing or chest pain.

Medication

Since prednisone did not seem really effective against my symptoms, my dosage is being reduced from 60mg to 30mg daily. Maybe that will help my weight and swelling lessen.

I also took my first CellCept today. This is used to help organ transplant patients from rejecting their new "parts." It may also help slow the progression of MG. I will eventually be on 2,000mg per day.

The CellCept works by lowering my immune system and my bodies ability to fight infections. I love ya'll . . . but I will wave instead of shaking hands for a while. I hope you understand.

See You Sunday!

2010-10-17 Two Days after Plasma Exchange

2010-10-17T22:19:00.003-04:00

Click Here to View my 2010-10-17 Two Days after Plasma Exchange Video

Last Plasma Exchange, October 15

2010-10-15T08:23:00.002-04:00

It is 7:20 AM and I am in the Apheresis Unit for my last plasma exchange. I should be back in my room around 11:00 AM. We will head home after they pull the vas-cath out of my neck. The pull does not hurt, but the pressure to stop the bleeding does. They apply a lot of pressure to my jugular for about 15 minutes. Ouch!

I will do a more detailed report tomorrow about how I am feeling and what results I see from the treatment so far.

In the mean time, thank you to the Apheresis Unit for doing a good job with my treatments. Thanks to Nine South and Six North for your hospitality. Thanks to the transportation unit for the rides. Thank to the Nephrologists and Neurologists for devising and monitoring my treatment plan. Thanks to Dr. CL for putting this all together.

Thanks to the church, church staff for their help during this time.

Special thanks to Cathy for "keeping me in line" at Vanderbilt.

Plasma Exchange Update, October 14

2010-10-14T17:42:00.007-04:00

We talked with Dr. CL around noon today. He is pleased with the progress I am making with the plasma exchange. It does help, but for how long?

I am still a "unique" case (OK, use weird if you want too). All of my current diagnosis are still valid, but not text book. The diagnosis are the best fit for what is happening to me.

Long-term is our concern now, so here is the game plan.

The prednisone will be reduced to 30 mg per day over time. Ideally, we can get it lower eventually, but I will probably be on low dose prednisone for a long, long time. I have not responded that great to the large doses of prednisone so it's time to lower the dose.

I will continue with the other medication as directed. They do give me some relief.

I will have a follow-up with pulmonary doctors at Vanderbilt for further evaluation of my breathing problems. I am breathing some better, but still have problems on exertion.

I still have the chest pain, I do not notice much difference with the lidocane swallow. I will reschedule my endoscopy with Dr. Schmidt when I get home. I chose plasma exchange over endoscopy.

I will start a new medication in about a weeks called CellCept. This is is an immunosuppressant drug used to prevent rejection in organ transplantation and also a very mild chemotherapy. It "may" slow the progress of Myasthenia Gravis--so bring it on!

My blood sugar has been fairly normal, but was up this afternoon. It was 210 so I had 4 units of insulin. (The ice-cream sundae was worth it.)

I will also do IVIG infusion the next time my symptoms get worse. This may help reduce the need for plasma exchange and can be done locally in an infusion center.

Heading home on Friday!

Cathy's Update for Thursday, October 14

2010-10-14T16:30:00.004-04:00

The day started early again; plasma exchange at 7:00 AM and back in the room at 10:45 AM. Treatment is going well with no reaction to the albumin. They are not giving Kerry FFP (fresh frozen plasma) because of the reaction he had in March. He is getting a synthetic albumin for his blood liquid.

He is able to walk better, but is still having pain in his chest area with walking. I guess this just goes along with the Myastenia Gravis. He is just now getting his Mestinon and other medications at 11:30 AM. Kerry has lost 12 pounds in 8 days. That's not bad... 300 lbs last Wednesday and 288 today...even with milkshakes! Now explain that!

He has one more treatment on Friday. Plasma Exchange is hard on the body, but if it helps . . .

Dr. C.L. stopped by to discuss long-term treatment options, which Kerry will relate in his blog. Later. Cathy

2010 10-14 Thursday Plasma Exchange

2010-10-14T09:29:00.002-04:00

Click Here to View my 2010-10-14 Thursday Plasma Exchange Video

Cathy's Report, October 13, 2010

2010-10-13T21:37:00.004-04:00

Today is Wednesday, October 13, 2010. Kerry left at 7:00 AM for his treatment. I ate his breakfast--a slice of bread, grits with no salt (heart healthy), and nibbled on the pears. I sent back the fat-free skim milk. Grits are one of those food items you almost would rather not eat without salt. The dietary staff sent a packet of Mrs. Dash Seasoning Blend©. But I am here to tell you that is not something you want to eat on your grits. The spice packet would go well with chicken perhaps, but not grits! Just to try it, I sprinkled a tiny amount, stirred it in, and bravely took a tiny bite. It was Yucky! So, I will not try that again. However, breakfast didn't cost me anything, so that was good.

We did get a private room late yesterday afternoon. Believe me, what a blessing!! It was quiet and peaceful, which is what we both needed. We both had a good catnap Tuesday afternoon. Everyone here has been very nice and caring, which is really appreciated. I do try not to be a bother to the nursing staff, so I bring anything that might conceivably be needed for Kerry and myself. In other words, I don't travel lite! I keep the excess in the car, and make a daily trek there for the next days needs, which works well.

I better go for now and check on Kerry up in the dialysis department.

Kerry was doing okay so I took the opportunity to make my daily trip to the car.

Kerry got back around 10:30 AM, so he had the remainder of the day to rest up. He made one lap around the hall in the morning and was tired afterward. However, he had not rested after his treatment. Later, we made two trips and he held up fair. Around 7:30 PM, we made two more trips around the hall and he was holding up pretty well. The doctor ordered a Lidocaine Viscus, which is a thick Lidocaine swallow for his chest pain. He seems to think it helped, so he had more about 8:00 PM. He feels a little stronger.