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.