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Tremors, muscle twitches

Hello dear forum friends. I’m a newbie here and learning a lot from you all. I am AChR positive, bulbar presentation with lost voice and swallowing issues. Did 5 plasmapheresis sessions, no improvement. Did also the first 2 sessions of Rituximab (14 days apart, last one done 10 days ago), and I feel my symptoms are worsening. I am now on mestinon 60 mg 3 /day plus prednisone 20 mg. Has anyone experienced their fingers shaking? Any muscles twitches? I have twitches all over my body and my fingers and my toes sometimes move on their own… thank you for any sharing.

  1. Quinine for cramps; magnesium helps as well.

    1. Quinine and magnesium are both known to be possible triggers for MG. Have you ever noticed any worsening of symptoms while using them? Best wishes 😀

      Jodi, Team Member

    2. no, no! Not a good idea.
      They both can *cause* cramps and twitches and whatever in MG people.

  2. I feel your pain. When I'm having a flare the right side of my body goes absolutely flaccid. Right leg with foot drop severe arm weakness and horrible right-sided face droop. My husband also tells me I slur my words. I thought twitching in my legs with something else until reading your experience. It's just awful. You're not able to control it or make it better. I have found that taking in a warm, not hot, shower helps more than anything. The problem is showering and drying myself is just murder. I feel like I've had a workout afterwards. I'm just super weak. I've just started back on methotrexate a week or so ago. I'm hoping to see a decrease in symptoms within 6 to 8 weeks. That may be a bit early but I'm hoping. I hope you find something to alleviate the twitching as well.
    By any chance do you have RLS? I hope not as it can aggravate you to pieces. Talk about unwanted twitching, oh my.
    So, all I can do is send wishes and kindness do you. I hope you feel better soon

    1. rotator cuff with two tears severe tendulitis in my Supra and infra if I need this muscles. Had surgery October 24th repaired the rotator cuff and resectioned and muscles in front and back of my shoulder. Have been in a sling for 2 months and now I am going to begin physical therapy. The problem is now the symptoms have begun in my left shoulder exactly like what I'm just went through with my right shoulder. I don't know how having such weakness from myasthenia has caused so many problems in my shoulders that require surgery. There's no muscle atrophy so it's strange that this has happened to both my shoulders. I haven't done anything because the tears.

    2. I really appreciate you sharing what you’re going through. It sounds incredibly challenging, and I understand why you feel worn out. I’m really sorry to hear that you’re now experiencing similar symptoms in your left shoulder. That must be very frustrating, especially when you’ve been working hard on recovery. Please take care of yourself during physical therapy. Sending positive thoughts your way!
      Jodi, Team Member

  3. I have twitching by eyes always afraid it’s a stroke. A.so now I get muscle cramps at nite. Drs aren’t worried about it. Always afraid the crisis is coming back ugh! Still on mestion and finally lower steriods to 10 mg trying to get off. Now I have 2 fractures in my spine they think it’s the steriods. Hate this disease we never know what’s next! Oh yea and effecting my bladder ugh

    1. Mestinon causes urinary issues. Urgency and overactive bladder.

    2. oh yeah. Same here entirely! How are you managing with the pain? How are you managing typing? 😆 more double letters than I care to talk about. Thank God for spellcheck!


  4. Hi I have tremors in my right hand every time I try to hold something. But I’m not sure if it’s familial tremors that run in the family or related to the MG. They have seemed to get worse but it was there somewhat before my diagnosis.
    I take a lot of the mestonin, 6 pills/day 60MG each. Plus 3 Glycopyrrolate and 50mg of prednisone. My eyes give me so much trouble, I feel like they’re almost swollen shut, vision is not clear and my swallowing and breathing are off. I have to be careful with everything. I sleep sitting up. Sometimes I try to lie on my side but find myself waking up struggling. So I don’t get a lot of sleep.
    I’m not sure if the amount of meds I’m on has anything to do with the shakes I’m having.
    I’ll ask my doctor.
    Denise

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