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

Highest Steroid Dose You’ve Been Prescribed

What is the highest steroid dose you have been prescribed for Myasthenia symptoms? Did a doctor order this after you were in a crisis or significant flare? Have you been...

Not reacting to treatments

Hi there im a caretaker and my spouse has MG 3 weeks ago he was not feeling good since the new IV treatment was not lasting him ( vyvgard) And...

Neck Pain

Do you have Myasthenia gravis and experience neck pain? https://myasthenia-gravis.com/clinical/pain What does the sensation feel like, and when do you notice it? Have you found any remedies to help? As...

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...

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