Reply from Brian
1) Any idea how long it may take to respond to IVIG? Or could there be some recovery taking place that I just wasn't feeling yet?
2) Burning is on the outside of my right leg that runs from just above my knee to about 3/4 the way up my leg. It started in November of last year. I also have the same feeling in my left leg, but in a different place. It starts at the bend of my leg (above my calf) and runs about 1/2 way up the back of my leg. It started in April of this year.
3) The burning is not felt upon exertion. It is primarily felt at night while lying in bed and can be constant at night. I sometimes notice it during the day, but it's when I'm not doing anything (sitting). It's hard to tell, but it feels like it's right under my skin. It could be in the muscle, but I think it's nerve pain (maybe exposed nerve from demylination).
4) I do have weakness in my legs. No noticeable atrophy yet, but if it follows the course of my upper extremities, I know it's coming.
5) No major pain with atrophy. In my upper extremities, I had days where I had tingling, numbness, and burning, but for the majority of the time it was painless. The pain that I did have was before and during. Right now, I don't have any sensory symptoms in my upper extremities. Just weakness, atrophy, and continuing progression of this disorder.
6) I dont know if I told you this, but the Neuro that diagnosed me with CIDP started me back on IVIG last week. He's pretty convinced that it's auroimmune. I hope he's right.
Thanks for your reply. Do you have PMA?
Brian
I would hold onto the CIDP diagnosed, too. Some people simply don't respond to IVIg, so that is easily explained.
As far as your burning, nerve pain: Is it constant or is it only felt upon exertion? Does it appear to be in your muscles or elsewhere? Was it there initially with your symptoms? You also said you feel it in your legs: Do you have any problems with your legs?
I also asked you previously about the other type of pain you are having with atrophy: What does it feel like and did it happen before, during or after atrophy?
Again, hang in there Brian. We're all thinking about you.