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

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.