Any adivce???

November 25, 2008 at 12:04 pm

Have read your notes several times but this is the first time to post one. We are just wanting to compare notes and see if there is help. Will try to be brief. My husband, John, diagnosed with CIDP 4 years ago, had IVIG for 2 years. New doctor stopped them, prescribed Cell Cept. We were told these would just slow down progress of the symptoms so it is hard to tell if they helped. He continues to get worse and has never had any remission or improvement. The neurologists here have said they don’t have any other treatment to suggest. Mayo Clinic has a waiting list a year plus.

We knew Prednisone was out there but not recommended. I really appreciate the posts concerning the usage of it. The one from Alice was especially informative. At the rate he is going, John will be paralized in legs and arms in two years. So you see our urgency.

We moved from where the diagnosing doctor was to near Wichita, KS and have not found a doctor who seems experienced with CIDP.

Any response from you readers would be appreciated.