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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  • Sweetadrena

    Extreme frustration

    3
    My dad was recently diagnosed with MG and when they did the ultrasound on his kidney to see if he could take the medication, they found a tumor on his kidney.  The tumor is very slow growing and they say the operation is very simple, but they are concerned about the MG.  His neurologist had him up to 3 pills of Mestonon a day but he was still slurring his speech so she increased it to 4.  Now...
  • CWFK

    Hot Flashes

    1
    Hi all - just wondering if anyone else is having hot flashes. I'm assuming it's part of the joy of Prednisone, but wanted to reach out and see. I get 8-10 a day and several over night. Not fun. Anyone else?
  • TRyao

    HELP! some opinions please

    1
    Hi there,My dad has a MG last year. He went to thyroid removal surgery and since then the doctor has prescribed below medication that my dad has to take daily- Probanthine Bromide 15mg- Nifedine LA 30mg- Cell Cept Mycophenolate mofetil 500mg- Prednisolone 20mg + 5mg- Pyrodostigmine 60mgAfter removal of the thyroid near lung area last year september, condition seems to be good with medication...
  • Callum

    Myasthenia gravis

    1
    HelloI'm a newly refurbished person in one respect as I have overcome a pretty severe alcohol addiction. I'm 5 years sober and went through the mill with what it all entails being an alcoholic, including pancreatitis twice and I was resuscitated etc etc. I'm writing an autobiography on it all. About 4 years ago I had a seizure, since then I've had another four but epilepsy has been ruled out...
  • wgreen19

    Port from tunneled catheter

    2
    I'm finally transitioning from getting stuck in each arm for plasmapheresis, to a tunneled catheter, and now finally a port.  My question, to those of you have experienced it, can they remove tunneled catheter and install port at same time?  My neuro wrote the order, but I haven't had the appointment that will provide that information.
  • gonegirl3

    Waiting for a Diagnosis

    8
    My journey started about a year ago. I developed blurred vision and drooping eye lid on right side only. Saw my opthalmologist who felt I was allergic to my contacts and dx with GPC (Giant papilary conjunctivitis). I was ordered around of steriod drops and two other eye drops. My drooping and blurred vision cleared. This reoccured three months later and I was retreated over the phone, again...
  • 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...
  • whales86

    Legs giving out = Falling

    3
    i hv a ?   Do any of you get warning your legs are going to give out on you ?  I'm struggling getting my MG back under control again and things are just a mess.  The Eyes lids and doubling are a pain and can get unmanageable but for the most part you can keep yourself pretty safe my legs are giving out on me and down I go.  Fell a couple of times now. Today's was the bad 20+ stitches on my...
  • whitsend

    Myasthenia crisis

    4
    My husband is now in hospital with suspected MG crisis. He was struggling with his breathing and was agitated . Leading up to that he was starting to hallucinate a bit. At emergency, they said that had i brought him in even a few days earlier, they would have treated him with antibiotics and sent him home...I am sure he would have died. He really struggles with his breathing, he's lost a lot of...
  • cassynchris

    Sick with a cold

    Hello, I have had a head cold and cough since last Wed. I have been taking over the counter meds since than but it seems like it is not working. I know having MG you can't take a lot of different meds. I called my Doctor but hasn't got back in touch with me and I am hoping to see one of my Doctors tomorrow morning. I can't sleep because I just cough. I want to know anybody have any ideas for...
  • deleted_user

    Stomach Issues???

    Has anyone had their stomach shut down as a myasthenia symptom? I was hospitalized twice due to the fact that my stomach stopped working (peristalsis). My eyes also went to double vision. That is when I was diagnosed with MG. When I started the mestinon and prednisone (due to my diplopia) my stomach muscles began to work again...however, My nuerologist as well as other doctors insist that MG...
  • chester

    Thank you rhanson

    0
    This is a great big thank you for your advice to getting a new neurologist. Saw him today and will be starting on prednisone and mestinon mix. I will not be satisfied with the status quo  (live with it or it is all in your head) as my last neuro had said. Looking forward to the new meds.chrster
  • Raquel-Childs

    Any Tips on Natural Remedies for MG?

    I was just wondering is there anyone with Myasthenia Gravis that use or have tried any natural products?Thanks Raquel
  • hopefulx

    Alternative remedies, Walter Last Article.

    I wish I would have found this support group sooner, as I recently had a family member die because of an adverse reaction from the medication prescribed that led to excessive mucous formation, which led to a 'cholinergic' crisis, which ultimately led to his death. Trying to make sense of this disease I had never heard of, I did extensive research that led me to this article wriiten by a German...
  • grecogirl

    A new problem

    4
    I have been taking 10 mg of Prednisone and some Mestinon p.r.n.  About a month ago, after stopping the Prednisone I had a bout of double vision and it took almost a month before it resolved and going back on the Prednisone and Mestinon.  I have been feeling okay, but have noticed at night, if I lay on my back, it is hard to breathe.  I feel a sensation in my throat that feels like it is...