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Read conversations, start a discussion, and connect with others about myasthenia gravis.

Did Your MG First Symptoms Happen All at Once, a Crisis?

A Myasthenic Crisis is the most severe event Myasthenia gravis can cause. Although it can vary, a crisis typically involves weakening multiple muscles, double vision, unsteady balance, and swallowing difficulties...

Do You Have a Preference of Older or Younger Doctors to Treat MG?

Do you prefer a young or older healthcare professional to treat your MG? Age by no means determines how much knowledge or skill a doctor offers. And an individual could...

Potassium

My readings tell me that low potassium can affect one’s muscles. Once upon a time I went in for a kidney stone removal. Before they would blast my kidney it...

Ivig treatment at home

I have been approved by Medicare for IVIG treatments at home but was informed by Optim Infusion there is a $4239.50 out of pocket expence. Anyone know anything about this....

Soliris (Eculizumab) Outcome & Side Effects

Eculizumab (Soliris®), https://myasthenia-gravis.com/biologics, is a Myasthenia gravis treatment approved for generalized myasthenia gravis (gMG)(https://myasthenia-gravis.com/generalized) & anti-acetylcholine receptor (AChR) antibody-positive (https://myasthenia-gravis.com/causes). Have you been treated...

Blood tests are negative but have symptoms

I have many of the symptoms of MG- loss of muscle strength around my mouth, sometimes trouble chewing/swallowing /drinking water some slurring of words but the blood tests are negative...

Share some medications that have been proved to be useful for CMS patients.

Hii everyone! I have a neurological disorder called congenital myasthenic syndrome (CMS). Despite trying various medications, none of them have been effective. My neurologist has suggested ephedrine treatment, which has...

Refractory Mg-Does Your MG Not Cooperate With Treatment?

Do you have refractory MG? If you are unsure of this term, refractory MG refers to anyone with MG in which: "MG symptoms that do not improve with typical drugs...

Tinnitus

I have tinnitus which coincidentally started about the same time my other neurological issues did. Have others had this same problem and if so, has your neurologist said it was...

Side effects vs. Symptoms

I'm 74, diagnosed in 2019 did steroids, MESTINON, and CELLCEPT and I find that the side effects of the medications are as bad as the symptoms. I'm presently on ULTOMIRIS...

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