Reply To: Diagnosed at 12, Treated 20 years later, need help

March 6, 2014 at 4:49 pm

Have you considered other treatment options? IVIG does not work for everyone, myself being a case in point. After no positive results with the IVIG infusions, I tried Ratuxin with mixed results, prednisone, cellcept, several of the MS drugs and plasma exchange. Diagnosed with CIDP in ’96 (after having GBS in ’85), so have been fighting it for a long time. My current treatment consists of 2000 mg cellcept daily, plasma exchange every three weeks with a 1,000mg IV does of prednisone. This has kept me pretty stable for the past several years. As I am sure you have read on this site, everyone responds differently to the various treatments, and sometime the body builds an immunity to the various treatments reducing their effectiveness.

Regarding a neuro, you may consider contacting the Craig Institute. They are a premier spinal injury facility, but would think they would know a go to doc in Denver. Good luck.