- CASE FILE
Rare autoimmune, diagnosed & treating but not getting better, just maintaining.
ABOUT THIS CASE FILE
Symptoms started in 2008, went thru several tests & 4 different specialist to finally come to a diagnosis & treatment in Oct 2014 of IVIG & now Subq IG. Lots of physical therapy & occupational therapy. Still not getting better, but mostly maintaining. Original diagnosis was CMT: Charcot Marie Tooth, however after more tests & 3 different genetic tests & genetic specialist it's been switched to CIDP by both KU Medical Center & St Louis neurologist. During 2008-2014 with no treatment I continued to ditieriate. I was forced to retire from the military after a very distinguished 27year career, there was no way I could continue with the treatments starting. I have very little use of my hands & wear braces to walk. Due to keeping myself in very good shape, I've been able to stay out of a wheelchair. But, I still have times when I'm not sure how long I can maintain. I want more answers on treatments available. I've been blessed with a very good VA in taking care of maintaining my CIDP, but no advances!! I'm 54 years old with 4 children 18-25 & I want to be able to play with my grandkids when they come!! I don't want to feel like I'm 100yrs old every morning I wake up!!