Thanks for sharing that, and I’m glad it’s working for you!

I don’t quite understand it all, to be honest. Even the Mayo physicians were skeptical of IVIG. For years, since my original neurologist left, I feel like a crazy person trying to explain it to neurologists. I suspect the issue is I have no other markers of autoimmunity except this autoantibody that doesn’t have enough research yet to explain what it means. In addition to the SFN, I have seronegative spondyloarthropathy (Seronegative = No markers in blood tests).

With the autoantibody markers I have, there are studies that link it to small fiber neuropathy, but all the studies are small, and there’s conflicting results with IVIG. So it seems the benefit is uncertain, it’s difficult to get insurance coverage because it’s considered experimental for my condition, and it’s a big undertaking, which all seeks to contribute to neurologists’ hesitation.

My neurologist at home helped me get an appointment with another neurologist at Johns Hopkins. He wants to get a second opinion first, so we agreed to see what he thinks before going forward.

Thank you so much for sharing. I’ve come across very few people with similar conditions who tried IVIG.