May 12, 2010 at 10:04 pm

Rhonda ~ the worst pain I ever experienced w/CIDP was about the 3rd evening of my initial 5-day IVIG treatment. The pain was throughout my entire body but especially in my knee joints and my lower legs were on fire. That was scary and the pain was ‘moan out loud pain”, not the constant numbness, the electric shock, the ‘arrow in my shoulder’, ‘alligator bite on my foot’, constant fatigue or the other bizarre symptoms I still have. IVIG has ‘worked’; for me for over 10+ years now and I take 80/grams each 6 weeks along with 3mg/day alprazolam. The alprzolam (xanax) was prescribed because after sleeping about 15-20 hours a day for a year ~ one day, I couldn’t sleep at all! After 3 days of that my doctor gave me alprazolam for ‘anxiety’. It has a positive effect on me as it reduces my numbness and I get a ‘normal’ 8 hours sleep.
I wish you well and hope you find the right combination that works for you.