Reply To: need spome advice on this cidp rollercoaster ride??

February 19, 2012 at 5:18 am

I’ve been on IVIG for 2 years and 3 months, 25 gms every 10 days. My doctor wants to lengthen my IVIG to every 12 days now. When I tried every 14 days x3, I relapsed. I don’t feel I could handle the 12 day frequency; even though it’s a difference of only 2 days. I don’t feel that “normal” or great. It’s like a rollercoaster ride; some days I feel okay; some days my thighs feel weak. I still get the electric shocks, tingling, and muscles aches. My doctor says every 10 days is too frequent for IVIG. But if I need it, I dont think it’s “too frequent”. I also have this “numbness” underneath the ball of my right foot. I have this feeling in my legs now; I think it feels like “mild burning”. These are new symptoms for me.
I don’t understand this disease. Does anybody get muscle pain? Or is it nerve pain? Or is it related to the demyelinated nerves that’s causing the pain?