I have had a severe case of CIDP for over 7 years now; left with permanent residuals. I walk with AFOs & a cane, hands aren’t great, & I need a wheelchair for part of the day. I was originally dx with a very mild case of GBS in Duluth, MN on April 2nd of 2002 & given 5 Plasma phersis treatments. Even though I kept deteriorating, I was told that it was normal. Bt April 27th, I could no longer walk & had totally lost the use of my arms & hands as well. I would remain that way for almost 3 years. If I had been correctly dx with CIDP originally & given IVIG when I kept getting worse, I believe I would be in much better shape today. BTW I was a patient at Mayo in Rochester, MN from April 27th for 3 months!
I think poeple ask if one is sure if they have CIDP because through the years we have had so many come on, only to find out later on that it was CMT, ALS, or other neuropathies. It helps if one states what tests they have had (spinal tap, sural nerve biopsy, EMGs, NCS, MRIs, etc.) as then it is more likely that the dx is correct. Never feel offended by informative posts; as these people on this forum will give you more of their time than the majority of neuros out there. DO NOT quit posting, this has always been a great sight for newcomers to learn from. WELCOME!!!