January 5, 2008 at 11:46 am

Welcome to the forum! I have had a severe case of CIDP for almost 6 years now. I was like you, I deteriorated very rapidly in the first few months & was at first dx with GBS. But when I continued to decline after IVIG infusions I was then rediagnosed with CIDP. I was in a power chair with virtually no use of my hands for almost 2 1/2 years, but now can walk with AFOs & use a cane when I go out. When I get worn out, at home, I always have the powr chair to fall back on. I still suffer from fatigue & find I need 10-11 hours of sleep to function (I hate taking naps.)

Are you on oral prednisone or infused solumedrol? I was just asking, as my weekly solumedrol infusions of 1,000 mg are what kept me functioning just enough to stay out of the nursing home. But I still had to have someone with me at all times. I gained 80# during the 21 months I was on steroids, which has been a real battle to take off. I also had to have cataract surgery in both eyes in September of 2004. I got a rash that did go away when I finally got off of them, but still have the scars. I would definitely suggest that you try IVIG if your insurance will go for it.

BTW I would be happy to correspond with you via email or phone if you would like. I know how one can feel so all alone with this illness…