Condition Update -- Sunday, April 4, 2010

Today is Sunday, April 4, 2010 (my 54th birthday) and it has been almost one month since I began the five-day plasmapheresis treatment at Vanderbilt Medical Center. My last symptom comparison was March 21, 2010. I will follow the same format to compare January 23, 2010, March 21, 2010, and April 4, 2010. I will do the next comparisons after the CT/PET Scan sometime in April and then again just before my appointment with Dr. Lee on July 7, 2010.

It has been almost one year since I cut my leg while trout fishing and this long journey began.

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 4, 2010: I can feel a few more needle pricks, enough that I just do not poke my body any longer as I once did. I feel needle pricks over about 10% of my body now.

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

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 4, 2010: This has not changed since March.

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 4, 2010: This has not changed since March.

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 4, 2010: I feel stronger and more rested. I think this is improving with time.

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 4, 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.

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 4, 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.

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 4, 2010: This is improving slightly. I still have trouble catching my breath at times.

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 4, 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.

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 4, 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 anhydrosis (not sweating). I must be careful not to overheat. This is still part of my autonomic nervous system that seems to be most affected now.

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 4, 2010: My voice seems better to me.

January 23, 2010: "I was diagnosed around 2005 with a partial CN-10 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 4, 2010: This has not changed, and probably never will.

January 23, 2010: "My vision changed somewhat in July 2009. My peripheral vision field is 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 4, 2010: My peripheral vision is almost back to normal. I have more than a 180 degree field of vision now. This is normal for me.

January 23, 2010: "My jaw muscles hurt when I eat anything hard, such as M and M's."

March 21, 2010: There is no change here. I like M and M's, but since it hurts to eat them I have opted for cheese cake instead.

April 4, 2010: I still opt for cheese cake, when Cathy will let me have it.

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 4, 2010: Part of my nervous system is improving, parts are staying the same, and nothing is getting worse.

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 4, 2010: This has not changed since March.

January 23, 2010: "In mid-January, I started having kidney trouble. My local physician found blood in my urine on January 18, 2010 (hematuria). "

March 21, 2010: I am happy to report this is no longer a problem.

April 4, 2010: This is still not a problem.

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 on July 13, 2009, without trying to loose 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. I did have a lot of fluid retention from the plasmapheresis.

April 4, 2010: This has not changed since March.

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 4, 2010: This has not changed at all since March. I may have to live with the tremors.

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 4, 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/infaraed sensitivity.

January 23, 2010: "Orthostatic hypotension diagnosed (blood pressure drops upon standing) on January 18, 2010.

My readings on January 23, 2010 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

This has not really changed except for an increased pulse rate while resting. I still have orthostatic hypotension.

April 4, 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 (feeling faint)

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 (feeling faint)

Sitting down five minutes later: 148/85 pulse: 82 (headache)

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.

Summary Update (March 2010)

There are a variety of nerve types and fibers in the human body. Some are large fibers and some are small fibers. Some control pain, perception and some control touch, feeling. Some control balance and others control motor functions. Since, my condition involves various types of nerves (polyneuropathy) some of my symptoms may change or improve at different rates than others. The type of nerve fibers affected has a direct bearing on the symptoms I experience.

It seems the symptoms related to my large nerve fibers are improving, while the symptoms related to my small nerve fibers and autonomic nerves has not changed much, if at all. Was the treatment worth it? Yes!

Summary Update for April 4, 2010

I can definitely tell a difference in my condition, and so can others. I am improving dramatically in some areas. No symptoms have worsened. Other symptoms may never change, but I can live with that. I am still hopeful and praying that everything will continue to improve and heal. The plasmapheresis treatments are working.

Ok, here is my diagnosis of what happened. After all, I am a doctor: just not the type that can do you any good medically.

The tetanus shot on April 24, 2009, trigged an autoimmune response in my body. This could have been compounded by a possible viral infection mentioned in my post of May 26, 2009. The autoimmune response triggered a mild case of Guillain-Barre Syndrome that had a fairly quick resolution. This would have been around the time of the Erlanger and Memorial hospital trips. But, since a spinal tap was never ordered, and I was given steroids at Erlanger, we will not know for sure. The autoimmune process also caused a reaction in my lymphatic system that sent my lymph nodes into antibody overdrive. The resulting flood of antibodies and lingering damage from the GBS, caused my body to present with all of the non-typical symptoms. The plasmapheresis treatments cleansed my blood and has allowed time for my body to heal and begin the process of returning to normal.

A second possible diagnosis is related to the partial Tenth Cranial Nerve Palsy (CN-10) noted in my post of June 16, 2009. This would be very similar to what I described in the above paragraph. Whatever caused the CN-10 palsy stayed fairly dormant in my system until I started hurting and dull aching in 2008, which I wrote about in my post of May 26, 2009.

Still, there is a third possible diagnosis I do not like to think about, but only time will tell for sure. It involves a lot of "ifs." If my symptoms worsen, and if my body starts producing more and more antibodies, then it would strongly indicate a paraneoplastic condition (hidden cancer). To be sure we do not overlook any possible hidden cancer, doctors recommend CT/PET Scans on a regular basis. I am still waiting to hear about my April scan date.