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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  • Summerlover

    Undiagnosed still

    3
    Still not sure this is what I have. Now on neuro number 3. Had an appointment in Boston with specialist. Wasted trip. He basically said can you hop? I tried, made it off the ground may 1/16 of an inch, then he said I was fine, and asked " what would you like me to do for you?" No further tests, nothing. All blood tests negative. My new neuro has scheduled me for a second EMG because he wants to...
  • I’m stable with my MG. Only taking 2000 mg. Of Celcept daily. Now I’m 70 years old and was diagnosed in 2014.  Only take Mestinon as needed. I’ve found a very good Doctor in NWA. I have bone to bone on my knee and finically have a date to do it if my Neurologist and my PC give me clearance. Any of you had the surgery and how did you do? Thanks
  • Daisy6381

    Newly diagnosed On mestinon not working.

    I was recently diagnosed with MG (9/27) and I was diagnosed 19 yrs ago with fibromyalgia and chronic fatigue syndrome. I started having vision issues about 4 years ago, but they would only present when I was either extremely cold (feeezing) extremely tired/fatigued and at the end of the day. I went to my ophthalmologist he said it was eye migraines. So I went 4 yrs with an incorrect diagnosis.We...
  • Nem123

    Mysthenia Gravis in 78 year old male

    8
    Hi everyone, Thank you to this group as I have spent the last few days reading various posts and comments. It has been very helpful but I wanted to ask your help with regards my 78 year old dad (who is not too good using such groups as this online) who was diagnosed with MG a few months ago. He has a thymoma and they want to do a Thymectomy and also start IVIG treatment. However, reading...
  • Bradrod44

    Possible help

    3
    I have been having eye issues with no help for months. I just recently been diagnosed with myasthenia gravis but dont want to take meds. I tried taking hemp oil and within a week my eyes are back to normal. There are a few companies that sell it but not with the same potency as this company: bradrodriguez.primemybody.com My doctor said to continue use and they would possibly do a cause study for...
  • carolstrong

    alcohol

    2
    I am beginning to think wine and other alcohol make my MG worse.  Do any of you have similar thoughts?
  • throstle53

    Statins and autoimmune disorders? Is there a link?

    3
    Can all of you other 927 people help me. This will not apply to all of you.You see I have a gut feeling that for some of us, MG has been induced by the ingestion of Statins. Can any of you recall, may be restrospectivally, when you had the first symptoms of MG? These symptoms may not have been so obvious in the first place. I would like to  know if you had been taking statins prior to these...
  • Vinniecat

    My dad can't seem to get out of the crisis mode.

    2
    My 75-year-old dad was diagnosed last month and spent 8 days in the hospital with a feeding tube and IvIG treatement which seemed to help.  The Mestonin decreased his heartrate too severly so he also got a pacemaker put in.  He improved enough to get the feeding tube out and went home only to have his symptoms start worsening after about 10 days.  Now he's back in the hospital getting...
  • sonnetsongbird

    New here and in crisis

    3
    I was diagnosed in 2010 and have at times had almost complete remission with steroids and Imuran. I have had a thymectomy. As of late I have had several breathing crisis and profound weakness, due to a sinus infection flaring me. I just completed a 10 day course of 5 IVIG treatments, and I am still weak as a kitten, which hasn't happened in the past. I am bedridden due to leg and neck weakness. I...
  • NotSuperMom

    Henry

    1
    My son Henry was 1 and a 1/2 when his eyes started dropping. It only took two appts to get a diagnosis thanks to Dr. Watson and Dr. Brown. Right away he was put on mestinon and scheduled for a thymectomy. We were told that since the thymus was enlarged he could go into remission after surgery.  This did not happen. He was on the mestinon for about 4 years along with prednisone. The mestinon...
  • Wilewin1

    Newbie, sort of...

    6
    I went through the normal headache of getting diagnosed. It took 5 years. I have had 3 exacerbations this summer and am only blaming myself. I have done things as though I am my previous "normal".  I keep hoping for a tap on the shoulder and a whisper in my ear, "just kidding".  It hasn't happened and I haven't fully accepted the "new" me.  I know I am not unusual in this and it is somewhat...
  • copperzincbear

    Given ofloxacin ear drops at ENT clinic - bad?

    1
    I was at an ENT clinic today and had the doctor look at my ears because I think they had fluid in them.  He promptly picked up a bottle of ear drops and put them in my ear, explaining that they were an antibiotic.  I didn't think much of it because I've had topical neomycin/polymyxin b/hydrocortisone ear drops before with no problem and with the approval of my neurologist (caution is usually...
  • RosieSoaring

    Bloating and breathing issues... from Mestinon?

    8
    Good morning, Family! I am grateful for glimpses of relief from Mestinon, but was too impatient for magic. So, I have been dealing with some unpleasant side effects. The worst one is bloating from gas. Like with my acute exacerbation in March, I feel like the gas/bloating is pressing up on my diaphragm and restricting my breathing. In March, the gas/bloating seemed to a residual affect of having...
  • lindalarkman

    Not diagnosed as yet, but suffering so much

    9
    I have had breathing difficulties for a year.Two years before I was diagnosed with wasted lower back muscles and the neurologist called it camptocormia. I was hospitalised last Christmas for 6 days as the breathlessness got real bad. Now I find I cannot raise my arms and I drag my right foot. Also the last two days my speech is impaired at times.when that happens I found it difficult to swallow...
  • SleepyInChicago

    Unable to breathe laying down - Myasthenia Gravis?

    5
    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...