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 month.

About my job...I am a pilot for a large commercial carrier and they have many restrictions as to what drugs you can take and still fly...one of the drugs that disqualifies you from flying is Gaba. So with that in mind I need to do anything I can to maybe get 50% better or so and get off Gabapentin...600 mg a nite. I have tried to keep my use of Gaba to a minimum but I need sleep and that helps.

So the last time I went to my Neuro she basically told me that the diagnosis is NLD SFN..she wants to do a skin biopsy although she said it would not change her treatment of me...which is Gaba and other pain management techniques. I told her I need disease modifying treatments and offered up the idea of IVIG and she said in her opinion it would not help but if I was willing to pay for it she would prescribe it...since she said that maybe its worth the risk to try and get me back in the cockpit.

So I thought I would put this Q to the group...is it worth the risk...she said 4 months and it would cost about 8K a month...after 4 mos. she said we would realize if the therapy is working. If it gets me better by half and off the drugs I could be back in a career i have had for 20 years. Has anybody here seen improvement to their SFN when being treated with IVIG?

I also noticed that there is more interest here in the states that IVIG may help SFN (Dr. Oaklander? at Mass General)...and there is a study in Holland where they are using IVIG vs placebo for SFN patients which started last January but won't be complete for another year or so... it sounds like there may be some
chance that this may help some of us...especially if there is some dysfunction with autoimmune system.

I appreciate any ideas or comments...thank you