u/Aanierenhausen

I have been through all the tests under the sun it feels like, MRI, EMG, Autonomic testing, tons of blood tests, and finally had a skin biopsy in April. I saw my neurologist for follow up today and I do have POTS as well so he was focused on what I’ve done for that and I have been doing everything that he recommends (I have a cardiologist that typically manages my POTS). Finally I asked him about my SFN because that’s what my appointment was for. He told me that my biopsy is normal, but I still have SFN and it’s not progressive; even though I told him it has been getting worse… basically he told me that there’s no treatment for me at this time and that I can come back in 2 months for blood work etc.

I am so frustrated because this has been going on for a year and a half just to be told there’s nothing they can do after all the testing I’ve been through. Idk what else to do…

I got a message from my neurologist about my testing it states:

“The left thigh and left calf epidermal nerve fiber densities are completely normal. There is no evidence of an abnormal protein deposition or inflammation or amyloid protein.
 
You still meet criteria for small fiber neuropathy by symptomatology and examination, but there is no evidence that there is any immune / inflammatory or neoplastic cause that we need to treat. Per the autonomic testing, you do meet criteria for POTS (as related to small fiber neuropathy), but not a full autonomic neuropathy.”

I already knew I had pots and thought this was the case. But his message has me nervous that there’s no treatment if it’s caused by my pots.

Anyone else with SFN that’s caused by pots? What does the treatment look like other than the typical pots treatment? Mine has been progressively worsening and I wanna slow it down as much as possible…