Exploring Rare Disease: Issacs Syndrome

[BarbiePetals]

I was doing some searching on the internet on twitching (I know I shouldn't be) and came across Issacs Syndrome. It's a neurological disease with simular symptoms to BFS. It said it's very rare and most doctors don't know about it. It is not nearly as scary as ALS but not much is known about it cause not that many people have it. It causes muscle twitching, buzzing, pain etc... People say it has taken years for them to be diagnosed with it. Just in case anyone is interested in checking it out. Not that I think too many of us here would actually have it but it is another disease other than ALS that causes twitching.

 

[Krackersones]

This syndrome is well known by many members who've googled their brains out and is the subject of other posts if others want to search the board. It is also known as neuromyotonia if you want to search that term too. I think it is another condition that is difficult to diagnosis because there is no one test that diagnoses it. Some people have a positive VGKC antibody test but others do not. I think you could get this diagnosis if you twitch, don't progress to weakness, and respond to immunosuppressive or immunomodulating treatments.Krackersones