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!

    6
    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...
  • jaywalkn713

    Mestinon & Prenisdone

    5
    hello all, newbie here. I was diagnosed with MG in 2011.  Thanks to God I was diagnosed within a year, the miracles of insurance lol. Anyhow, I been living with this illness for the past six years with little complications. I guess I was one of the blessed ones. I started  on Mestinon 60 mg X 3 times a day. As I got back to my normal routine and I started to try and live a normal life I began...
  • slowmovingmama

    What tests helped to diagnose you?

    5
    Hello all :) I am new here. I have been having trouble walking and moving in general for a year now. I've noticed that repetative muscle movement makes me very, very fatigued. I can only walk small amounts around my house and have to use a wheelchair otherwise. The docs have ruled out MS. From reading the symptoms of MG online, my symptoms sound exactly like MG to me. I am curious, what tests...
  • sachin89

    How did Thymectomy help you?

    1
    My Neurologist has diagnosed me with Myasthenia Gravis based on these symptoms.1. Double vision, facial muscles around eyes feels lot of strain and fatigue as I use them more to counter diplopia.2. Jaw fatigue after continuous chewing / talking3. Throat feels slightly blocked after continuous swallowing4. Neck fatigue upon some active work, feels like "I need to support the neck"Test Results1....
  • jagjad

    Xanthan Gum

    0
    I am posting this information because I believe that we should not eat food that contains Xanthan Gum.   You can Google "Xanthan Gum" or start at this link which is from wikipedia.   https://en.wikipedia.org/wiki/Xanthan_gum
  • stephgcanada

    Tight muscles?

    4
    Hi there , I am new on the site but so happy to have found others who are experiencing the same things that I am . I have been browsing through the posts and one thing I haven't noticed is whether anyone has this same feeling that I experience . It is a feeling in my arms and legs that my muscles are pulled tight. They are stiff and always feel like if I stretch them out I will get a muscle...
  • justsayin

    MG frustrated

    1
    Hi everyone,I am so frustrated with this illness. I aquired MG after chemo for breast Cancer. I also aquired RA and sjrens and test positive for hosimotos. I was diagnosed about 4 years ago. After several visits to eye doctors to find out why I have double vision. Spent several hundreds of dollars on eyeglasses that did not help. Then I started choking on my foods. I went to National Jewish where...
  • JulieSA

    How should I work up to a full dose of Mestinon?

    6
    Hi everyone - I'm just starting my test run of Mestinon. Eventually, I should be taking 60MG three times a day. The neurologist said to increase the dose as tolerated. I'm not sure what other people have done and what side effects there are from increasing too fast. I've been sick since 2012 and in a sad way am hopeful that I have MG because otherwise I'm back to not knowing what it going on,...
  • alianazli

    Is Imuran even working?

    3
    Neuro had me on 20mg Prednisone but my symptoms flared up and had to stop it. I now take 10mg and its been 7 months since I have been taking 10mg prednisone. My neuro then started my Imuran I take 2 and a half pill daily in the morning and its been 6 months. But my symptoms are not under control. I can walk and talk but don't feel much strenght like I had before the disease.I also take 4 tab...
  • Quen1966

    Feelings of foggy brain, ADHD (unable to focus)

    Hi everyone being new to MG dx on Sept 2, 2016. I wanted to know if anyone has experienced feelings of foggy brain, being forgetful and being unable to focus when multi-tasking?  I used to be the queen of muliti-tasking. I found myself struggling prior too and since my MG dx. I have been doing word search puzzles and playing mind games to help but it has been a struggle.  Has anyone ever...
  • sachin89

    Suspected MG, few queries

    9
    SymptomsI'm having binocular diplopia for an year, which got worse since 2 months.And recently i started feeling jaw fatigue when I speak for long time and feel kind of stiffness in the facial muscles around the eyes.I dont have ptosisDoctor's opnionDoctors whom I consulted here are having different opinion though few of them doubt Myasthenia Gravis.Tests DoneIce pack test didn't improve double...
  • Becky1993

    help

    5
    can some one please help me about 3 months ago i was prednisolone 100mg every other day... is this a lot ? and way dont i feel better i feel worse i can cope like this i can hardly move.thank you 
  • gonegirl3

    Anyone have pulmonologist

    Since my next visit isn't til June I have decided to seek out a pulmonologist on my own. He listened to all my symptoms and got me in quickly for cxr and pfts. I don't have a Dx of MG yet but cannot stand this shortness of breath and breathy voice any longer!!! It's scary to be sob!!! Can anyone give advise on how your pulmonologist handles your shortness of breathe?? He told me he has dealt with...
  • Amyjo

    MG testing

    7
    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?

    6
    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...