Quote:
Originally Posted by Sven
Hi everyone...I have been on the board for about 9 months and have used the info here to help me deal with this disease or condition or whatever we refer to this...how about beast? But I appreciate everyone's knowledge and help for one another.
Anyway, a brief history...During a very stressful time (Sept. 2015)...I woke up with tingling in my hands that progressed quickly to burning...then moved to my feet...and finally my back, thighs and scalp...this all took place within about 3 months. I have been pretty stable since Feb. 2016. I feel as though this condition has not really improved in anyway since February although the docs keep telling me it will get better. I have been on sick leave from my job and that sick leave ends next monthe.
I appreciate any ideas or comments...thank you
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I have confirmed autoimmune issues yet my bloods never indicate anything, they still don't despite the numerous symptoms I have. So blood tests are not entirely reliable. Based on my numerous visits to a neurologist the presentation of yours (like mine) can be suggestive of an inflammatory cause. In my post you see I am complaining of lack of effect and some flaring post ivig. But I do not regret the attempt in trying this at all. My neurobsaidbthat with non length dependent cases like ours he has about half that found benefit and half that didn't.
The steroid infusion sounds like a good first effort. I'm not sure why we went straight to ivig in my case but again I don't regret it. I've asked questions in my post about iv steroids also.
I totally understand your stress regarding work and Gabapentin. The Gaba is such a double edged sword, the sedation is a whole problem in itself.
So just to reiterate - don't let any consultant suggest autoimmunity is ruled out by negative bloods.