Fibromyalgia Action UK
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HELP!!!Does anyone have neuromyotonia/peripheral nerve hyperexcitability as well as me?

I can't seem to find anyone or any help groups for people suffering with this immune disease, I also have clinically possible myasthenia gravis, severe fibro, loss of vision (6/60 double all the time) arthritis, urticarial vasculitis! Need help in finding someone/group like FibroAction?

4 Replies

Hi Raeben98

you have got a lot going on just now! Of all the conditions that you have mentioned above, the only one that I am sure of is Fibromyalgia. This site is for all people suffering with Fibro, and while we may not be familiar with your other conditions, we will certainly welcome you here, and give you all the help & support you need. We are a friendly bunch of people, & all of our information about Fibro is up to date & and evidence based. I hope this is of help to you.

Take care GJ X

1 like


Have you tried searching for support groups for Isaacs Syndrome? I believe that is the alternative name for this disorder,,.

Good luck!


Wow, you do have a lot to contend with.

gentle hugs



Hi. I have suspected neuromyotonia. Feel free to make contact. I know the thread is old but also having trouble contacting getting support etc


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