Originally Posted by MAT52

Coming at this from a different angle I would have been relieved if I'd been told my skin biopsy results showed up positively. Then I might have been able to access proper treatment again for an immune mediated SFN. Presently the skin biopsies taken by my GP on my old island home are holding up the prospect of me getting onto further treatments to prevent progression.

They do say that SFN isn't a disease in its own right - the symptoms can be triggered by many very different causes - from chemo to diabetes to immune mediated neuropthies and central nervous system disorders such as MS and even certain cancers such as Multiple Myeloma. Speaking for myself I would be a far more positive person again if I knew that a) it wasn't thought privately by doctors to be a symptom of a mental health disorder or a wishywashy diagnosis such as fibromyalgia or b) part of a more serious disease that all my doctors are missing because they are over preoccupied by specific blood related diagnostic criteria. Also I know that each of the two the skin biopsy samples were only taken from my calves and were sent from my island to somewhere on the mainland and it was an unusual procedure for my location and also I was on antibiotics for pneumonia at the time so I wonder now how reliable these samples were.

So I'm in the opposite position to you and think that if I at least knew what was causing my widespread SFN and knew what the prognosis was I'd be much better at moving on with my life than I am. I have got used to being in pain over a lifetime of various conditions but I can't get used to the uncertainty or settle for the idea of having something so overwhelming as idiopathic.

I do have high BP now as well and I think it's just as scary to me because both my parents died prematurely of atherosclerosis - which I am starting to suffer from too and the medicine I am on isn't helping at all - so another is being added in too. SFN is awful and mine is slowly progressing but I'm just as scared of having a stroke.