Hi...I saw my neurologist and he will set up time for me to have a discussion with Dr Oaklander. He still does not think IVIG is right for me. He seems to have concerns about side effects. It has risks and does not always work so it is important to make sure it is appropriate for each person. Based on my "patchy distribution" of pain from face to toes he believes mine is a ganglionopathy and I will have pain every day for the rest of life. Not easy to take. He is testing (again) my ANA and also looking into hereditary causes, sodium channels. Two of his patients have hereditary causes and were put on sodium channel blockers reducing their pain from 8 to 2 on a scale of 1-10. On another post I mentioned my elevated B6 from a vitamin B Complex. He was not overly concerned about the level. Said I "dodged a bullet" by stopping it when I did but he is retesting the B6 level as well. That's it for now. Rainy and raw here in NH....not my kind of weather!

Thank you. This was very informative, more than anything else. I think I will contact her and see if she will see me. If I can arrange plans to travel from abroad, I will. I would like to see her and have her attempt to pin down the etiology of my SFN.

Besides all the valuable information it made me ecstatic to hear Dr Oaklander say the cause of disease in each person needs to be known. After listening to the full video I must say she is my idea of a great doctor and Mass Gen sounds pretty great to me as well. I am going to print out the list of blood tests recommended from the site and cross reference to figure out which ones I still need to do. Thank you!

I agree, and did the same thing.

We're you in the Mideast? It might have been too recent for the video, but I read that the great majority of veterans with Gulf War Disease have a gene that made their prophylactic "vaccines" for nerve gas...Mestosin (forgot the generic name)...neurotoxic...causing GWD and....neuropathy! I'll try to find the article.