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Shaking (tremor) and myasthenia

Hello! I was diagnosed with myasthenia gravis almost a year ago. I had slurred speech, difficulty swallowing and chewing, and than after some time my hands would get weak. The anti-Musk antibody came back positive but then my doctor retook the test while I also got treated with steroid and the second test was negative. So now my diagnosis is seronegative -MG..
I would often get shaky legs in the beginning if I stood too much, but soon enough my arms would shake as I moved them, the shaking gets worse with exercise, if I use the stairs my legs would go crazy. My doctor said it could be MG or it could be the steroid so I stopped taking the medicine. Months have passed and no improvement at all. I was wondering if anyone else have shaking while moving or after exercise? I barely have any symptoms beside this. My legs are weak sometimes but that is it, I rarely have difficulty speaking and the symptoms I had at presentation.

Thank you for reading my story and responding, it means much to me!

  1. Have you been tested for sleep apnea? If you’re walking up struggling (to breathe?)then you might want to check it out.
    Sue (oops3 )

    1. I have hand tremors pretty bad at the end of the day if I haven’t rested as I should. Also I have eye twitches when I’m tired.

      1. How impactful is this on your life?
        -Jodi, Team Member

    2. i Shake when it’s time for me to stop the exercise session

      1. Hello, yeah I think exercise makes it worse for me too, but unfortunately it comes without hitting the gym, just in day to day life

    3. hello as far as shaking goes...My hands would shake a lot and I'd notice my hands shaking after I've taken my meds as well but I do work with my hands so that could a factor. I take steriods and mestinon. I havent had that feeling in awhile but it definitely was a symptom I used to experience in the past. My eye lids used to twitch as well; in order to stop them I would stop and do a few hand stretches. Hopefully that helps. - Jazmin (team member)

      1. , as far as I know there is not a list. I have just heard things that are good neurotransmitters. I am sure that just like MG a list would not fit everyone. Hope you have a good day!! Sally Farrier...Myasthenia-Gravis.com (team member)

      2. I know avocados & pumpkinseeds can cause a flair up.!!

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