NeuroTalk Support Groups - Being Reviewed

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- Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)

- - Being Reviewed (https://www.neurotalk.org/peripheral-neuropathy/245947-reviewed.html)

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

How totally awesome for you and your sister ! It means so much to us when someone seems to care and wants to help.

Wish I could find someone here like that !

I've always thought there has to be a dr or facility that would like to review me since I have no A or C fibers left in my feet.

Please keep us posted. So we can follow you and your sister through this journey !

Debi from Georgia

Hi LouLou

Wow - I'm so pleased for you and your sister. Sounds like this hospital in Oxford is fairly advanced in researching neuropathy - it's encouraging to hear that under a Public Health System such as the UK has, there is progress being made in this area of research, and hopefully possible treatment that might help you.

Please could you take note of anything new that you may learn and if you don't mind sharing it we'd really appreciate it.

All the best for May 1st.

Quote:

Originally Posted by LouLou1978 (Post 1239177)

Great news Lou Lou - hallelujah! He is supposed to be the very best. I actually respect the fact he is NHS only because it says something when they do that and aren't all about the money.

Thank you everyone, i will keep you all updated. Will be interesting to see what tests are performed. Ill be keeping a note of them all and will get back to you. Hoping they may be able to give us some answers finally. Even if it is genetic, at least i will know what it is.

Sounds good Loulou! Its always nice to hear when doctors actually take notice :)

I was wondering though, does anyone happen to know any more about the Sodium Channel Blocker LouLou mentioned that was hopefully due out next year?

Might be the Nav1.7 drug that is in trials here.

Edit to add: more at this link
Nav1.7 - Wikipedia