I just had a relapse. .I was originally diagnosed in April 2014 and have had ongoing issues since. I thought I was actually getting better but the last two months I have had constant burning pain like pins and needles in my hands and arms. My neurologist recommended that I go in the hospital and have another dose of I V I G I received five infusions this week while in the hospital and I just got released today. I still feel terrible though. My pain has been so bad that I have not been able to continue outpatient physical therapy. I am on high doses of neurotin and baclofen which seem to be doing nothing. I am to follow up with my neurologist in two weeks to see how I am doing. I am also seeing a rheumatologist to see if he can provide any relief. I am hoping to resolve this burning pain in my hands and arms along with Terrible ataxia .so I can try to walk again. Any recommendations would be much appreciated. I am at wits end struggling to keep motivated with The drive to get better. As I make this discussion my whole upper body bounces back and forth with continued burning pain in my hands and arms
How are you, Steve? I'm sorry you didn't get responses earlier. You may wish to join our ataxia community for additional support. There is a link to it on the communities list on the Main Page. Feel better soon.
I will say that I have found relief with Lyrica. I didn’t have the burning pain in my arms. I have ataxia, and I had extreme weakness, hip pain, leg pain, and twitching in my legs. The Lyrica seems to be helping for now. I am also on 3000mg of cellcept a day. I had a relapse every time I would come off prednisone. This seems to be working since October 2014. I feel a million times better. I hope that helps a little. I hope you can find some answers.