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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  • ladyredbird

    What if IVIG treatment doesn't work

    1
    Hi Guys!  So it has been just over a week since I had my first IVIG treatment and I am not feeling any different.  Actually this past Saturday I was really hopeful, I was perky and was able to go grocery shopping. But then yesterday I crashed.  It was so difficult to walk and cutting up my food was a chore.  I am so discouraged.  I am thinking I am not on the right level of Mestinon yet;...
  • madoak

    Worried

    2
    Okay, the first blood test came back negative which threw me- not incidentally done by my current neurologist.  Apparently I was tested for the acetycholine one and not the muSK. I don't understand why both weren't done at the same time but anyways I found the neurologist rude, unhelpful and dismissive, hence didn't want to see him again. My symptoms are neck, throat and shoulder weakness. ...
  • hope1618

    Fallen and I can't get up

    1
    I was recently diagnosed with MG about 3 months ago. I am on the time span and Mestinon for MG. I also have autoimmune hepatitis that I was diagnosed with in 2012. I take prednisone and Imuran for that. And finally when I was 4 I was diagnosed with CREST Syndrome (scleroderma)- in remission now. I am 30 and my 28 year old brother was diagnosed with MG almost 2 years ago. I have been getting alot...
  • BlueDogg

    Diagnosing Myasthenia Gravis

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    I am a newbie to this site but my wife has all the symptoms of Myasthenia Gravis and so far all her test results keep coming up negative and the doctors are doing very little now. Her family doctor that has been following this has been very good and has watched my wifes health deteriorate and very strongly believes that it is MG but the Neurologists see my wife once and only look at the test...
  • nnyguy1960

    Double Vision Flareup

    0
    I have been pretty much symptom free for 9 months or so until last weekend.  I ended up getting double vision and slight ptosis in one eye. I am currently on cellcept, and had been off prednisone since labor day weekend.  My Neuro told me to try 5mg of prednisone each day, and get hold of him in a week.  I also have an appointment later this month.  So, after 6 days of prednisone, I dont have...
  • Rhanson

    Happy Thanksgiving -- and A Test

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    This is Thanksgiving week in the USA--being thankful for what we have and can do and appreciating the good in our lives.  Hope all of you are improving!There is a test that many doctors use to give us a score on our MG disease level.  You can read about it from the Doctor's point of view at this link The Quantitative Myasthenia Gravis (QMG) Test The test is a measure of how you are doing--and...
  • telboy

    weight loss

    3
    Hi I have been suffering from MG for  3 years now and I am on prednisolone and mestinon which keeps thing in check, but in that time I have lost two and a half stone in weight, doctor did tests but nothing seems wrong. Has anybody had the same thing happen or do they know if the tablets can cause this weight loss and why. Thanks Terence
  • deleted_user

    ocular myasthenia

    Does anyone else have just ocular myasthenia gravis?? If so what treatments have helped? does the double vision/droppy lids ever go away?
  • Quen1966

    Chronic cough taking Mestinon

    2
    Ever since I've started taking Mestinon I've had a chronic cough and my asthma that was previoulsy under control has become excerbated. I have gone from 60 mg 4x's a day to 90 which made the cough worst, extra mucus and breathing problems. Once I reduced my dosage back to 60 mg 4x's a day the cough lessoned but I still have coughing spells and my asthma flares up at least 4 times a day.  Does...
  • My journey started about a year ago and I am still going through some testing, a single something EMG next week - blood test and other EMG have all been normal, but my symptoms all present as MG and mestinon and prednisone are helping.  But, things aren't normal.  Will they ever be normal or do you adapt to a new normal?  They have only started the mestinon for about 3 months now and some...
  • This is a glamorous story about a fellow MGer -- he's antibody-negative, too. In the article there are several strange claims made about MG -- that it is making him blind (?) and that there is a five-year window in which MG sufferers will know whether they have a bad case or not.  There is also the long story of all the wrong diagnoses made by his doctors over the years. Anyway, it is an...
  • Hello All,I recently began taking Mestinon. Initially, the 60mg three times daily, but now changed to the extended release (180mg twice daily) as I was having too many ups and downs with it wearing off (losing my voice, leg and arm weakness). At times,I experienced the sensation of having pop rock candy on my tongue and throat soon after taking my Mestinon dose (every 4 hours x 3 to 4 times...
  • I am interested if anyone has used the ADA Act with their employer in order to continue working or as a way for the employer to conply with accomodating you in the workplace because of your MG.  Just curious, because I am hoping to eventually return to work, however my neuro says there may be restrictions because I previously worked in the field and may have to move to a desk job ?
  • whales86

    High dose Predison

    4
    hi. My stupid insurance is not approving my IVIG so I've had to go in Predison.  I'm currently on 40mg and it's only making me functional a work till about 1-2pm then I'm toast the rest of the day.  I'm hyper and exhausted all at the same time. And I can't sleep which doesnt help at all. Primary is putting me on meds to counter act to help with the sleep My blood sugars are horrible now in...
  • i only ask this due to it affecting all my body. most days i carnt walk and can no long eat food unaded due to chocking on food (drives me mad ) i can no longer get in and out of the bath and wash my hair. so affter some incorigment from a frend i put in po ip. but have been turned down and been told i will have to take it to cort. so just wanted to ask if enyone had put in for pip / dissabilaty...