Hi there,

I haven't posted for a while but thought i would update you. My sister has been having symptoms of SFN for the past couple of years and had a biopsy yesterday with the Professor in London who did mine, i went along with her for some support and answers. I have been very worried about a genetic disorder and my sister was told by her neurologist that there was no point in having the biopsy as if she has sfn , it will be genetic so there is nothing they can do to treat it. I told her to insist on having the biopsy which she did.

I told the professor what her neurologist said and he informed me this wasn't true at all. He also pointed out that because my biopsy showed increased nerve fibers , this was not in keeping with a sodium channel dysfunction ( the genetic part of SFN) and if it was would normally show a decreased nerve fiber on the biopsy. The professor thinks that if the biopsy is positive and shows a similar result as mine then he feels this could be a virus or something that has been and gone and left these symptoms which become more obvious when stressed or ill. He also pointed out that autoimmune conditions are genetic and run in families which can be treated. He said that alot of people who have inflammatory neuropathies can get better with treatment and sometimes they go away on their own.

I felt quite positive after this appointment and was pleased that he could give me some answers in respect of the genetic aspect. I could not understand it as my Neuro had run scn9a & 10 genetic tests which all came back negative. I feel very annoyed with the neurologist who told my sister this was a genetic problem and worried me to death.

It just goes to show how important it is to get a proper diagnosis as some neurologists just don't seem to have a clue about SFN!