Reply To: CIDP EMG/NCV shows no demylenation

May 13, 2012 at 2:33 pm

my cidp sounds similar to that too fred. Definitely immmune system related, not a lot of demylination, no pain, just distal axonal neuropathy with numbness and weakness in my feet and lower legs. The IVIG is helping some, but not as well as i hoped. prednisone made me worse . Mayo diagnosed it as “atypical cidp” I am getting ready to try an immunosupressant (rituxin) in a few weeks after ruling out any possibility of an underlying tumor which can cause cidp symptoms.
good to know about your Northwestern experience–i thought about going out there, but just had the feeling i too would be turned down due to the type of cidp I have. I still plan to try if the rituxin doesnt work—trying to buy time until my youngest child is out of high school, and thinking that one day sct might be available everywhere not just northwestern.