Hi there, I'm still undergoing tests and just don't know what to do with myself at the moment, I have severe nerve pain in both legs and I'm twitching, vibrating and tingling everywhere, from my face to my toes.
My NHS neuro doesn't seem to know what to do with me and I think I'd like to see a specialist, somebody who knows about sudden onset neuroinflammatory conditions, or post viral neuropathic pain. (I started randomly with a high temperature and these symptoms overnight in January, and I'm getting gradually worse). I also have severe pain in the tarsal tunnel area which started in my right foot and is now begining in my left, too.

Could anyone recommend a really thorough neuro who has experience in these areas in the UK? I'm based in Wales but I'm willing to travel at this point. Thank you all in advance

Hello Catonabroomstick

This could be Small Fiber neuropathy (SFN). I am also from Europe but not from the UK. Important is to find a good hospital which is well specialised in Neurology. They can run many blood tests, MRI's, do a lumbar puncture and a skin biopsy. The regular velocity tests from local neurologist are not that conclusive. They always told me as well, I am okay. But the symptoms kept getting worse. I was diagnosed with SFN via skin Biopsy and simulated wrinkling test. You can read my posts from a week ago.

Best of luck to you as well. I know exactly how you feel.

Hey Catonabroomstick,

The problem in the UK is that there are so few specialists and the neurologists that you see privately are the same ones that work for the NHS. All you are doing is jumping the queue. However you can go privately and request the tests outlined by tomhe or have other additional tests and you will probably get a tentative diagnosis.

However the treatments will be no different to what you have been offered already.

The question you may want to ponder is, will you be better off?

Pob gorau,

Atty