I've bee feeling as if doors are closing for answers but I'm unable to accept that this progressive SFN is ideopathic. Or rather I don't accept the notion of ideopathic as acceptable. However the other day I went to see an oral surgeon - my third to date - just because my GP had referred me with what he believed to be Fibromyalgia/ burning mouth syndrome. I wasn't expecting anything at all having had the traces of blood in my pee dismissed the previous week by a urologist.

This chap was older and obviously a very experienced oral surgeon. He had read the notes from my neurology reports and asked me to describe my symptoms. Acute pins and needles in arms, legs, scalp and gums with increasing numbness and autonomic symptoms such as no sweating, lack of sense of smell and taste, disequilibrium with problems keeping my balance or processing visual clues such as changes in floor surfaces and changes in lighting and moving objects. I explained that I think this is because I'm losing sensation in my feet and legs. I would still feel something if it hit my legs but subtly and slowly I am becoming numb.

He didn't bother examining my mouth but explained that the issues in my mouth and face are part of the neuropathy that is affecting the rest of me. He said this is not Fibromyalgia or ME or any type of chronic pain syndrome and my mouth and nose are affected by small fibre neuropathy rather than burning mouth syndrome. He told me that it is clear, from my fluctuating inflammatory markers that I have a rare type of immune mediated neuropathy. He was very kind and somehow reassuring and I felt believed for the first time in a while. He even knew what paired Oligloclonal bands were whereas my rheumatologist acknowledged this wasn't within his area of knowledge. He will write to my rheumatologist and neurologist to explain what he has told me regarding my mouth.

So I feel more positive that one day someone will diagnose and treat this unpleasant tingle, ache, burn, freeze, ant crawling, partially anaesthetised me. Here's hoping it doesn't come too late. The SFN is absolutely terrible tonight after a four day period of relative calm.