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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  • robt111

    CBD oil from HEMP works!

    1
    I did some research on the possible use of Marijuana for my MG. It turns out that there Marijuana has THC, the part that produces a High, and CBD.  CBD can also be extracted from Hemp and is legally produced and sold in the US.  CBD has a calming effect and has been used to treat a number of things including autoimmune diseases.  So I bought some and have been using it for a week.  So far the...
  • dingdong

    Terrified awaiting testing for EMG!

    7
    Hello Everyone, I am new to thsi group and am terrified on the possibility that i hae MG.  Had blood test (ACH??) and was negative now awaiting the EMG on 4/4.  I have had to wait so long to see doctors and to schedule the EMG it has been brutal as you all know.  I just need some support and correct info please from anyone.  My story is back in Sept./16 i started feeling exhausted after i did...
  • Kiffereno

    Help

    0
    Wondering if anyone can help me. On the evening of 24th Feb I was out walking the dog when suddenly I found it extremely hard to breath, what would normally have taken 10 minutes to get home, took me the best part of an hour. I thought I was going die as I really struggled to breath. My neck became extremely stiff and I found it hard to keep my head up. Once home and sitting down, I took several...
  • Tesinato

    Can MG go into spontaneous remission?

    4
    Hiya everyone.  Been forever since I've posted anything.  Life has been more or less the rollercoaster for the last year or two, with lots of changes and such in my life.  As of the beginning of November, something has happened to me, and I'm not sure what to think about it.  I started feeling weird, not my usual self.  I was feeling a little stronger, and bit more capable then usual.  Over...
  • VooDooVox

    MG with Adrenal insufficiency

    4
    Hello guys,I'm in diagnosing process for MG. EMG and AchR-A is negative for MG but my ACTH levels are high.My symptoms are so similar to gonegirl3's.-I've chronic gastritis and now I can't eat at all. No problem with swallowing but it's like I'm feeling foods solidness in my body so I prefer soft or liquid. I lost 7 kg. I'm pushing to stay on 52 kg. No medicine for stomach seems to work. (nexium...
  • GFKey

    natural MG relief

    I'm new to this group but not new to MG. Don't know if my story and natural remedys will help any of you but it's worth a try. I was diagnosed in 1985. I've been through plasmapheresis, thymectomy, high doses of prednisone, mestinon regimen, etc. At one low point I could hold a pen long enough to sign my name but not make out the rest of the check; could not click a mouse button twice fast enough...
  • LadyLunar

    Thymic Hyperplasia

    2
    Hello, I am a 22 year old female, I smoked for 7 years and have a history of cancer on my fathers side.I was admitted to the hospital in Jan of 2017, I passed out suddenly while walking out of the bathroom, a CT showed a mass on my thymus that is 6cm x 2.5cm, which in my files is annotated as thymoma but speculated to be thymic hyperplasia by the radiologist. At the the time I was showing signs...
  • megancortes

    Flare ups buy antibodies are disappearing

    7
    Hey guys i made a post a few months back on how I started weakening again and how I went from 1 mestinon to 4 in a span of 1 year.Well it hasnt been better. Recently it takes the mestinon too long to work, sometimes it even takes up to two hours to work. And even when i take it I still feel week. Like I can swallow and breathe but walking down steps is hard.So I went to my two neuros and one of...
  • Amyjo

    MG testing

    6
    Hi, have had the initial MG lab work with negative results and a EKG with shocks from hand to jaw that was negative. Dr's have dismissed need for any further testing despite the fact that ice makes my facial droop go away instantly (said it happens all the time with other conditions as well and no need to consider MG.) I have severe fatigue with muscle weakness including falls, facial droop,...
  • Lataplat1

    Getting Diagnosed? Tests Negative ocular MG?

    4
    Hello! I am in the process of being diagnosed with Ocular MG. My DO, Nuero, and NueroOpp all believe I have it after 2 months of testing. But my tests have all come back negative. The MUSK antibody or ocular test?? Isn't covered by my insurance so my doctors started me on Mestinon to see if it would help. In one week there was no change so they wanted to start about 4 more drugs to see if they...
  • Teachershelly

    Is it MG?

    2
    Hi all I am new to this site.  I have been having some issues that I suspect are MG.  Hoping to get some insight from others.  Three years ago I started getting double vision when hot. Dr thought maybe a headache.  Last week I started having trouble with my legs.  They feel tight and hard to move like I worked out really hard!  The tight muscle feeling is now in my jaw, and rib cage as well...
  • CarolinaMoon1946

    Ocular Myasthenia Gravis

    5
    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...
  • gonegirl3

    RNS/EMG results With MG

    6
    So I finally had the long awaited RNS/EMG and was hoping for a Dx. But instead I will be headed for a sfemg. The results of my RNS was positive for decrement of trap area on my right side. The fellow tried to get the left to show the same and it did "but not enough to say it was positive" they told me they needed two positive areas to diagnosis with MG. Anyone else have these results or similar...
  • Kayliasmom

    Hello! New here..mother to 3 yr old just diagnosed

    2
    Hi everyone. Im hoping this place will help me with alot! Just last week my 3 year old daughter was diagnosed with mg..not sure what kind(ocular)or not?! Her 1 week check up is soon. This is hard to accept but were trying to positive. She has been started on mestonin 4 times daily at 1.3mg..for 3 days so far so good.the last 2 days been dwindling as the last 2 doses are given..mainly her eye goes...
  • organic1der

    Curavac update

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    For anyone following this: Phase 1B started in November!http://www.curavac.com/