Hi
@ProudActivist,
Sorry to hear you get these problems too. Out of interest, do you notice a mottling, red/white lacy appearance on your skin? I know this is not a symptom specific to SFN, but I certainly notice it as more obvious when my circulation/ANS is playing up. Some other things that were mentioned to me in clinic that I had never really considered related were lack of urinary urgency - I never get an urge to pee any more, to the point that I'll get sharp bladder pains for leaving it so long. SFN probably also explains why doctors/nurses/colleagues have asked what drug I've taken, because my pupils sometimes don't respond as they should...
I'm in the UK too. Initially a neurologist (not an ANS specialist) wasn't interested in diagnosing SFN - they just said it wouldn't help with any underlying diagnosis or treatment.
My POTS specialist cardiologist got involved and I was sent to another neurologist and investigated using a specialist technique called sympathetic micro-neurography. From my layman's POV it seemed somewhat similar to the single fibre EMG study I had to exclude Myasthenia Gravis. Supposedly it is more sensitive to issues with autonomic small fibre neuropathy than the gold standard punch biopsy. It can actually isolate the responses from different types of small fibre nerves, very smart, but pretty much limited to a few researchers it seems.
I used the SFN results as leverage to get Pyridostigmine prescribed, though that may have been a sensible escalation after being on Ivabradine for a couple of years with only partial improvement. I have heard from others here that their neurologists were considering IVIG if they returned a positive SFN biopsy...on the NHS(!!). Presumably following the lead from the American research & clinic's on 'apparent autoimmune" SFN/POTS (Dr Anne Oaklander for ref). I am booked in with a neuropathic pain dept. now, they want the gold standard punch biopsy proof... it remains to be seen what they will do if I return a positive result.
Ryan