Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and swallowing are most frequently affected.

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  • Hennie

    Poor blood circulation

    2
    hey, guys! so, the cold weather seems to have settled in this part of the world (Romania) and, like every year, i am getting frostbites. my toes are frozen, no matter what i wear and my finger nails are blue. i am shaking all day long and the only thing that gets me warmed up are hot baths. the irony, right? so, i take a hot bath every day at noon, as soon as i get home from school. i must...
  • JoAnneBe

    I know I have MG now I need a Doctor

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    Ok. I’m new and I know I have MG. I just now put it all together that I’ve had this for years and all these things that bring on or make MG worse I have had. Not knowing I had this and that all these things made it all worse. I just took Amitriptyline last night and all my MG symptoms got worse. I felt my left eardrum open and close and my drooping on left side of face and eyes is worse. My...
  • Jaydtoo

    Undiagnosed but may still be MG

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    Hello All, I am new to this forum and would like to share my story so far.In January 2017 I started experiencing double vision late in the afternoons and into the evening. I work on a computer all day and at first I thought that I was just overtired; but, over the next two months it started to happen earlier in the afternoons getting progressively worse as the day went on. Luckily, I have never...
  • lianac89

    Does this sound like MG?

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    I am 28 years old and currently have a MG workup in process. Only lab I have had done was the acetylcholine receptor binding antibody which was negative. My symptoms are neck and chest muscle weakness and difficulty swallowing. The swallowing is an everyday struggle, sometimes I can and other times I can’t. I had difficulty swallowing for 2 years, since giving birth, and honestly I thought i...
  • infoseeker

    mestinon effect variable

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    Anyone for whom mestinon worked great initially but later stopped working or made it worse? How long did u take, at what dose?also, do u get worse when serum K goes below 4?
  • GLORIA

    Sjogren s syndrome

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         I have myasthenia gravis for a few years, and my doctor is saying that I have Sjogrens Syndrome now. Has  anyone out there  been effected, are know someone that can help me to understand this problem. I would really appreciate your support and understanding.  Please share anything you can to help me understand better!   Thank you for your input.
  • lbd531

    New to MG, Would Love Advice

    7
    Hi all,I am a 67 year old woman who had a pretty sudden onset of ocular symptoms beginning 5 weeks ago. They first  thought it was Bell's Palsy, but my labwork overwhelmingly confirmed it was MG. My symptoms have gotten progressively more severe, moving to my speech and breathing issues. I live in Montana, where there is limited medical care. I was fortunate to get into an MG specialist at Duke...
  • drakeford1968

    Eculizumab ( Solirisp )

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    QuestionHas anyone had the pleasure of trying the new Myasthenia Gravis Eculizumab yet ? If so, please let M.G. family know your experience .
  • deleted_user

    Difficulty Walking

    Walking is one of my biggest problems. It's like I just can't get my legs to move the way the should or as fast as the should. My docs say my hips and shoulders are my weakest muscles. I feel like I shuffle around my house all day and it drives me crazy when I forget something and have to walk all the way back to the other side of the house. Just wondering how many of you experience difficulty...
  • t1207

    Experience from others???

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    Hello I am very new to this. I have struggled off and on for quite some time with muscle weakness and fatigued feeling. Recently over the past 2 months or so the weakened muscles and fatigued feeling has gotten worse. I went to the ED a few times thinking maybe my iron was low but it was fine, finally the last time I was there I was so weak and my speech was slurred or weird and my walking was...
  • t1207

    No diagnosis, more specialist

    2
    Hello I am very new to this. I have struggled off and on for quite some time with muscle weakness and fatigued feeling. Recently over the past 2 months or so the weakened muscles and fatigued feeling has gotten worse. I went to the ED a few times thinking maybe my iron was low but it was fine, finally the last time I was there I was so weak and my speech was slurred or weird and my walking was...
  • Td2290

    Help?

    6
    I've had blurred vision spotty vision and kind of seeing shadows in my vision. I get some double vision like my eyes aren't working together. My eyes become very tired often and sometimes painful. I get these weird episodes when my eyes roll around uncontrollably for a few seconds to minutes usually when I'm first waking up. I've been through this stuff before. First when I was 16 it lasted a...
  • Td2290

    Low iron anemia caused by MG?

    0
    While I am having some vision problems including slight double vision blurred vision shadows in my vision spots weak eye muscles my doctor discovered iron deficiency anemia. He checked for bleeding and none found. Is low iron common with MG?
  • sarahjane

    MG and functional disorders

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    I am 17 and was only diagnosed recently after having progressive symptoms for the past 4 years, since diagnosis I have been in and out of hospital with 2 crises and a thymectomy.  My Neurologist however was convinced for a long time my symptoms were actually a functional disorder and not mg despite significant evidence of disease. Has anyone else experienced a heavy push toward symptoms being...
  • NancyM

    IVIG therapy

    thank you for your responses. I am so stressed out about having infusions next week.so, is surgery pretty much a given with this disease? I am supposed to see surgeon next month. I do not want a sternotomy if at all possible. I am trying to see if I could be a candidate for robotic surgery. I have definitely noticed that stress makes it worse. I'm having a PFT test today and have caught a cold...