Condition Update, Sunday, March 28, 2010

It has been three weeks since I began my week of plasmapheresis. Some of my symptoms are improving, some are not. Right now, I do not feel any symptoms are getting worse. We may have stopped the progression of symptoms! Only time will tell for sure. The treatments were worth the hospital stay.

I am still very fatigued and exhausted; even when doing nothing. I purposely increase my activity level little by little. I have been unable to "do" for so long, it will take time to regain my strength. But, I don't want to over do and cause more problems. I definitely do not want to cause a relapse or restart any antibody production again. I did more walking and a little yard work last week (pulled a few hand-fulls of weeds). I paid for it with leg cramps. Oh well, no pain, no gain! Who ever came up with that dumb rule of life needs to have their head examined.

So far my blood work has been fairly normal and my skin biopsy came back nearly normal. I test negative for all known causes of neuropathy. But, on examination, my symptoms are atypical for normal peripheral neuropathy since they cover a wide area of my body. My NVC is a little slow and my EMG shows some axonal damage. Pinprick sensations are still greatly reduced and my autonomic functions are still out of sync.

It would be such a wonderful thing if the blood work, or other tests would just simply define ... "this is what you have; whatever 'this' might be." For now we still work from the most probable diagnosis, autoimmune-mediated small fiber neuropathy with autonomic involvement.

Not sweating is still a problem, but I did sweat a little bit today while preaching. It may have been caused by the hot stage lights, but at least I sweated. That's good news. I have noticed some changes at night when I wake feeling like I have sweated, but have not. Instead of being soaking wet with sweat, I feel clammy and then get very cold. It's almost like having chills and fever and the fever breaks. This happens frequently, often several times a night. Needless to say, it is hard to sleep.

I developed headaches over the last week or so. I am not sure if this is because I need to visit the chiropractor, or a new symptom. I seldom have headaches.

I am still not taking any high blood pressure medication. My pressure is a little high, but an acceptable trade-off over passing out. My orthostatic hypotension were as follows this afternoon (03/28/2010) shortly after eating.

          Lying down: 158/87 pulse: 78
          Standing one minute: 145/83 pulse: 99
          Standing three minutes: 144/87 pulse: 95
          Standing five minutes: 138/89 pulse: 98
          Standing ten minutes: 144/91 pulse: 111
          Standing twenty minutes: 150/100 pulse: 111
 
My pulse rate at rest is still in the upper 70's to upper 80's.  Not bad, but way above my usual average resting pulse rate of 55.