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.

0 Online
  • Hello all - just joined this group with the hope of learning from the expertise here.  My husband just ended 16 days in the hospital, prompted by an inability to breathe while laying down (not difficulty breathing, but rather total inability).  Many tests were run and came back negative.  The working diagnosis is Seronegative MG.  The question to this group is if anyone has experienced a...
  • cworkman

    Do you think this is MG?

    1
    hello all. Was reading in this group and hope for some opinions. So last two days I have had some strange symptoms. Yesterday I had some tongue soreness. Then moved to my throat on the left side. Tingling and hard to swallow... but still able to if I try hard. Today I woke up and it was gone. But about noon it came back. Almost like a mucousy feeling when I try to swallow. Feels more like it is...
  • ragdoll

    Is Mestinon helping or hurting?

    7
    I was recently diagnosed MG but seronegative. Sent home with Mestinon, starting at 15mg 3X, working up to 60mg 3X.   After first week at 30mg, double vision nearly gone and could walk instead of stagger. No breathing problems.  Being seronegative, I decided I probably didn't have MG, so stopped Mestinon.   A few days later, back to extreme weakness and double vision, so continued to ramp up...
  • db5919

    Weakness and Ocular MG

    2
    I was diagnosed with Ocular MG almost 2 years ago and in that time, there are days where I feel my whole body is affected. I get a different kind of fatigue than just not getting enough sleep, and I find that climbing stairs becomes more difficut, along with some facial numbness. I have a great neuro and have had exams with a few doctors, all of whom tell me that my weakness and fatigue is not...
  • NancyM

    IVIG therapy

    0
    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...
  • megancortes

    Balancing MG with school

    1
    To everyone who had to take MG to uni with you, how did it go? How did you balance your work so you wouldn't stress yourself more? Was there anything in your routine that you had to change? What about social life, did having to rest more hinder you from making friends? Did you tell your professors about your mg?I'm kinda planning to go back to school but I don't know if my mg can handle it since...
  • NancyM

    myesthenia gravis and IVIG treatment

    2
    Hi. I was diagnosed with MG about a month ago. This is all new to me as I amentioned sure it is for all. I was shocked when they told me that my infusions would be everyday for 5 days. I guess I thought I would just go in and out in one day. MG has not effected my legs or feet, just neck pain, double vision, arm strength & a little problem with drinking & eating at times, but since being on...
  • Coach

    Is this MG?

    8
    I'm just in the process of being diagnosed with MG. Having some rather rough days. I can only do a few errands/chores without needing to rest before doing more. Early this morning I woke with a whopping headache, neck pain, nausea and my face feels like someone is pulling down on it. Is this MG? Has anyone else experienced this?
  • deleted_user

    For Men - Sexual Problems From MG

    6
    This is for the men...do you suffer any problems with sex that are attributed with MG?If this is something you'd rather not discuss in a public forum, please feel free to Msg me.Please, this is not a request for someone to spam me with Viagra offers, etc. I will report any violation of Daily Strength TOS.Steve
  • kj555

    I'm new here! Any info would be great

    7
    hi everybody!I just want to start off saying that I'm glad there is a place where people can come together and talk about MG. I am in the midst of being diagnosed, but I have very classic symptoms starting with an eye disturbance that has progressed into double vision, ptosis, tiredness and general muscle weakness within a month.I have very young children (2 and 5 months old) and I can't pretend...
  • copperzincbear

    I'm freaking out about flu & azathioprine

    4
    Someone at work was diagnosed with the flu.  I don't have totally close contact with him, but he's on my team and sits a few cubicles away.  Does anyone have any advice as far as looking for signs, when to see the doctor, or can even just calm me down about worrying about it?  What's it like getting the flu on immunosuppressants?  Do you end up in the hospital?  I didn't get my shot yet this...
  • TarikRever

    Hi. Who uses a wheel chair like myself here?

    2
    There are several ways someone is effected by MG. Some can move and walk but get extremely tired. Others like myself it hurst to do almost everything and can't get arround without a wheelchair and a walker with wheels for things in reach. My voice goes out at times. At moments my wife has to watch me eat so I don't choke. I really hope to converse with some of you on here that can relate to this...
  • Quen1966

    IVIG denied by my insurance co. HAP

    Hi everyone,  does anyone have any information on how to get IVIG authorized by my health care insurance?  I received a denial from HAP for IVIG infusions which was submitted by my neuro.  I have been taking 20 mg prednisone, 50 mg imuran and mestinon 60-90 mg 4-5 x a day for 4 months and the improvement has been slow and the side effects of the steroids and Mestinon are rough at 90 mg of...
  • SRV

    plasmapheresis not working?

    2
    Hello,I developed rapid onset of Myasthenia Gravis symptoms midway through July.  The weakness is mostly restricted to my speech and swallowing, with some facial muscle weakness, too.  Soon after the diagnosis, my doctors found a thymoma and performed a thymectomy.  Although it was great to get the tumor out of me, my MG became greatly exacerbated in the immediate aftermath of the surgery.  I...
  • BouncyHead

    Does this sound like your experience with MG?

    6
    Sorry for the length, especially since I'm sure people hate these kind of posts.  I don't usually post on message boards (any type, I'm an introvert even on the web!), but I'm desperate at this point and don't know where to go next for help.  I am very worrried at how most of my symptoms have become dramatically worse over the past month.  Do the symptoms I list below sound like what any of...