Hi
We have just returned from our 2 day stay in Oxford. Has a ton more tests and saw professor. He does not agree with the other professor we saw and feels this is a sodium channel problem. He says we are at the mild end of the spectrum. The other professor I saw told me I had increased nerve fibres but this professor disagrees and told me they were in the normal range I think they were 11 in 2014. I declined another biopsy. They are saying there is a sodium channel blocker in clinical trials but about 5 yrs away. I go back if they find a mutation they have tested me for but said there is only a slim chance they will find it. He said we are only 6th family they have seen in last 4 years. It's very rare but I'm sure there are more but they just don't get as far. So need to wait 3 months now until I get my results. It's difficult as other profess or thinks autoimmune and we have both been offered ivig. Genetic professor thinks not and not to try ivig unless there is proven underlying autoimmune disease. All very confusing!