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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  • daniellelauren95

    Need Encouragement

    3
    Hello! I'm a 31 year old female with MG. I was diagnosed about a year and a half ago. I had a crisis around February last year and started I improve. But right after Christmas a few weeks ago I started to flair up again. I'm so frustrated and sad and feeling hopeless. I feel like I'm a stranger in my own life. Does anyone else ever feel like this?  What do you do or tell yourself as you're just...
  • madoak

    Not Myasthenia but...

    0
    Went for the results of my EMG in London last week - definitely not myasthenia but it seems that I have had a brachial plexus injury all along. I did have an accident in 2011.  Haven't been sent the report yet but the neurologist summarised that I have loss of signal coming from C5/6 nerve root (pre-ganglionic he called it aka off nerve root from the spinal cord).  Loss of signal to moderate...
  • tmj

    Firguring this out

    Im a 49 yr old male with an unremarkable medical history. In Feb of 2016 I experienced a bout of double vision, it manifested quickly and continued for several weeks. I went to an optometrist and was referred to an ophthalmologist who then referred me to a neuro-ophthalmologist.The dv resolved and then reoccurred ( with slight differences, 'stacked images' that varied from left image high in one...
  • SeattleWriter

    How long before you give up on a taper?

    1
    Hi all! I'm SO happy I was finally able to log back in! The new DS website has been giving me trouble for months now, but I've been reading an keeping up with you all even if this is the first time I'm able to get back to posting. My new neuro is having me taper prednisone (I've been on 10mg every other day, and he's taking me down to 7.5 every other day) now that I've been on Cellcept for about...
  • lieguy

    Medicare refuses to cover cellcept

    I have had Mg vor over ten years. I is under control with Mesitonin and Cellcept. When I retired two years ago, United Health Care Part D covered the drug with pre approval. this year, the denied Cellcept because treating MG is an "off label" treatment and not covered. Has anyone had this experience or has had United Health Care approve the druggary
  • grecogirl

    Cellcept

    7
    My double vision has diminished after 4 weeks ( posted below).  I am on 40 mg a day of Prednisone and Mestinon about 4 times a day.  I am feeling better, but not like I was, still a bit shakey.  My neuro started me on Cellcept and it was horrible and I took it about 3 days and stopped. I would like to try and get back under control with the Prednisone and hopefully taper down to 2.5 mg where...
  • CarolinaMoon1946

    Ocular Myasthenia Gravis

    4
    Anyone out there dealing with only Ocular MG? I was diagnosed 60 years ago with MG but it remained in my left eye all these years. Then suddenly, last Sunday morning, April 15, it showed up in my right eye....big time! Struggling with it all week. Compared to many of the stories I have read and heard about, mine has been a milder case since it never generalized but even then, it is very...
  • kimberlyromano

    Rituxan

    2
    Hello everyone, I was wondering if anyone is currently on Rituxan and how well is it working for you? My wife was diagnosed with MG 5 years ago. She has been on IVIG treatments for 2 and a half years and they do not seem to be working. She has recently had a major setback over the holiday weekend and was in the hospital until Monday. She is back at home but is very weak and is having trouble...
  • Quen1966

    IVIG denied by my insurance co. HAP

    4
    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...
  • chester

    Merry Christmas and happy Hanukkah

    2
    Happy holidays
  • JohnAnonymous

    Newbie

    8
    I was diagnosed having ocular myasthemia gravis a couple of weeks ago and have a couple month wait to see a neurologist to get a base line on the blood test results for something I can't remember.  So far, mild double vision and ptosis of my right eye that is becoming annoying and a concern about safe driving.  I did discover one useful thing to do to cope...When watchin TV, I use a band-aid to...
  • ladyredbird

    What if IVIG treatment doesn't work

    5
    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;...
  • whales86

    Starting Plasma Exchange what to expect?

    5
    Hi. The stupid insurance is controling my life and I'm being forced to do plasma exchange.  They will not approve the IVIG I was doing so will on.  This whole new thing I'm just not happy about.  I will be exposed to a hosipital environment 1-2 x a week hv a  catheter all increase for infection.  Let alone the amount of time it is going to takewill I be able to work will I get this done ?...
  • grecogirl

    What to expect from Cellcept

    3
    I posted below about my double vision and yesterday I started taking Cellcept in addition to the prednisone and Mestinon.  I am just wondering what the Cellcept does and I know it takes a long time to kick in, something like 6 months.  Will it eventually take the place of the prednisone and Mestinon?  My double vision is still with me, almost 3 weeks now.  It is just a tiny bit better, but...
  • chester

    Question about mestinon

    7
    hi everyone ,I am 51 years old and was diagnosed with mg just over a year now. Started with double vision and Ptosis. My neuro put me on 120 mg 4 times a day. It helps the symptoms no more double vision but I get slurred speech when tired or exerting too much energy. I still cannot drive and I do this for a living, my neuro refuses to put me on predisone. My question is should I insist for...