Hi there- I can relate to your experience. I have autonomic small fiber neuropathy (it’s the likely cause of my POTS, but there’s no way to prove this), and I was so upset after realizing I had peripheral neuropathy in the first place, then narrowing the diagnosis to small fiber neuropathy (which was actually misdiagnosed the first time), to find that despite the significant numbers of people affected, it’s so marginalized. By the time I got to diagnosis, it just felt like I got a collective “shrug.” There’s no cure and if the dysautonomia isn’t severe, it’s not “life-threatening,” so it seems not to matter to doctors. Or I get dismissed because it’s “outside the scope” of their expertise.

I suspect because of this, it’s not as lucrative for research or as a specialty area. More awareness could help—because it can be a struggle even to get doctors to realize someone can even have SFN without diabetes, post-chemotherapy, or B12 deficiency. I don’t know of a solution though…