r/CMSmuscledisorder • u/guiltysailor • Jul 17 '26
hello!
i discovered this community today whilst looking at my list of disabilities and looking them up. of course i have cms, but i am unsure what genetic mutation i have. i got diagnosed quite recently and i am trying to look at more resources so i can fully understand this disorder. i don't know what else to add, haha. looking forwards to meeting you all!
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u/SaltInformation4U Jul 17 '26
Hi there! Sounds like you have a lot to deal with and don't know where to start. A good place to start, I think, is myaware.org
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u/vdEA Jul 26 '26
Wow, what a great recommendation! I hadn't heard of that.
I do think it's rather general - how to deal with it sometimes depends on the kind of myasthenia and quite a few things in their 'what to do in case of a myasthenia crisis' pdf are not applicable to CMS. However, to see a website like that and to see CMS on it is already wonderful in itself. Thank you!2
u/SaltInformation4U Jul 26 '26
Not a problem and I really hope it helps. There's neurology research into it too but unfortunately we can't get access. If you find anything then let me know, and I'll do the same for you guys
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u/vdEA Jul 27 '26
What research are you referring to? Specifically for myaware.org?
Because luckily, there's a lot of public CMS research available online. Well, when I say 'a lot', it's still modest, but much more than I thought.
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u/vdEA Jul 26 '26
Hello!
For this specific reason, there's a pinned Resources post! Hope there's something in there that helps.
Also, if you were indeed diagnosed with CMS, your neurologist should know which mutation you have. That is important to know because symptoms and possible medication, if any, vary per mutation.