Hi Joanna, of course I will definitely keep you updated. To be honest the rheumy seemed at a loss to the cause. I am too in the south of UK and have a very good neurologist who also works in London. He was away for a few months so I saw a locum neuro who did a lot of rheumy anti body blood tests, I haven't received the results yet.

When I saw the rheumy consultant she did the tear duct test and saliva test. There was an abnormality with the left tear duct test so this is why she is doing the lip biopsy. To be honest I don't think she had much of a clue about small fiber neuropathy. Going back to the skin biopsy, I am guessing you probably saw the same professor as me, if it is he said the skin biopsy can give clues to the cause,which it did with mine, it showed that the nerves were re-generating too much rather than where there is a loss of the nerve fibers , he suggested this is in keeping with a neuroinflammation, not sure what that means or auto immune disease, like sjogens.

He also mentioned voltage gated potassium channels, he said it has also been seen in people who have had chemotherapy or certain drugs. He has said in his letter that metronidazole which he noted I took before onset of symptoms can cause sensory neuropathy but he wanted everything else checked out first. I am hoping to get blood results and see the neuro in a few weeks, I am hoping I may get some answers. it is so frustrating!