[LouLou1978]

Hi,

Just thought I would give you an update on my situation.

As you already know i have NLD SFN and my sister was also diagnosed in December 2016.

I have now been referred to a specialist hospital in Oxford UK where they are experts at SFN. Just had a phone call advising that me and my sister will have to go in for two days. I was impressed that they said they would put us up in a local hotel for the night all expenses paid! They are going to repeat all the blood tests, then will be performing more specialised blood tests which i don't believe we have had. They said even though i have been given negative results for the SCN9a and 10 gene that this doesn't mean i don't have the mutation. They are going to perform specialised tests that look at the variants of this. He also told me they would be taking blood for SCN11 and TRP1 too. They would also be performing further electrica tests and also another skin biopsy which we he said are supposed to be more advanced than the ones we had at our local hospital. He was telling me about all the research they are doing and also that there will be a Sodium Channel Blocker out hopefully next year. I was so impressed! I have never had anybody so interested in my condition, everyone seems to palm me off with oh well its idiopathic, take Lyrica bla blaa blaa. I'm amazed that they are so interested in us! I hope we will get some answers soon! I'm seeing them on 1st May!


Lou Lou