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rambo77 (@rambo77)

Myasthenia Gravis and COVID

Autoimmune Diseases | Last Active: Oct 17, 2021 | Replies (34)

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@amandajro

@skhollandmt you will notice that I moved your post into an existing discussion on Myasthenia Gravis. As well, here is another discussion that could also be of interest on the same topic, if you feel this may be a better thread to share your post:
https://connect.mayoclinic.org/discussion/hi-everyone-let-me-begin-by-telling-you-some-of-my-story/
It is great to hear that you have a scheduled consult at Mayo Clinic in September and it is great that you are doing so much to plan for it. What type of information would be most helpful to start?

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Replies to "@skhollandmt you will notice that I moved your post into an existing discussion on Myasthenia Gravis...."

I'm struggling to believe it can be myasthenia with negative blood tests and negative EMG's. But I do know not all diseases are "proven" by positive tests,are sometimes are just based on symptoms and medication result. I'm wondering if anyone else has had similiar experience? Also, what type of response do others have with mestinon. I've noticed I am very more noticeably depressed on days I don't take it but that seems weird…..because I can't find anywhere that it works on mood. It also seems that I have almost a "build up" response where I feel better after staying consistently on it for days…..but I try just to take it on days I work because there again I question the diagnosis and then feel stupid for taking a medication when I question the diagnosis. BUT on the other hand it is the ONLY thing that gets me through super busy work days!
So……….anyone out there diagnosised despite negative blood/EMG studies? And any comments on response to mestinon? Any comments of what else it could be besides myasthenia but still responds to mestinon? I'm so tired….and so tired of feeling stupid/crazy because I feel so yucky but don't have positive tests!
Thanks,
Stephanie

How many people out there are seronegative and EMG negative? Am I just crazy or does this actually happen? What symptoms does everyone have? What do you do to help besides mestinon? Does anyone else notice mestinon helping with mood?

Any feedback/comments/suggestions/advice…..just reaching out……struggling to get through this

Thanks
Steph

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