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A MGteam Member asked a question 💭
Clarkdale, AZ

Wanted to share with the group what I've just been through. About three weeks ago, both of my legs buckled, and I very nearly fell in my bathroom. I had absolutely no strength in either leg at all......0 strength. I called my neurologist and he said, "you're in an MG flare. Get to the ED immediately." I went to the ED at my local hospital, and they transferred me out to Barrow Neurological Institute in Phoenix for evaluation. I wound up in ICU in Phoenix and underwent a myriad of tests… read more

February 25 (edited)
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Answer Summary

Members rallied around someone whose seronegative myasthenia gravis diagnosis was dismissed as functional neurological disorder, sharing their... Read more

Members rallied around someone whose seronegative myasthenia gravis diagnosis was dismissed as functional neurological disorder, sharing their own years-long struggles to be believed and finally diagnosed despite negative test results. Several members emphasized the importance of finding a neuromuscular specialist rather than a general neurologist, with many describing how persistence and self-advocacy eventually led to proper treatment with medications like Cellcept and Mestinon that significantly improved their symptoms. A recurring theme was the frustration of medical gaslighting and being told symptoms are psychological, met with fierce validation from the community that these physical experiences are real and deserve serious medical attention.

A MGteam Member

I am seronegative and have had or still experience the symptoms of myasthenia gravis. I’m on cellcept and have been for 1-1/2 years. Fatigue is my main problem.
My diagnosis was hard to get but I kept on until the docs finally gave in and I had a electro test over my eye which registers me as seronegative myasthenia gravis. I knew what I had and just had to follow all the avenues to prove it. It is not in your head. I would find another doctor which is not easy. Good luck.

February 25
A MGteam Member

I am so sorry for what you are going through. I know how rough it can be dealing with myasthenia and having to take care of a spouse with a debilitating disease as well. I pray that God sends a good neurologist in your area who will take good care of you. And you are right. You know your own body better than the doctors. They do not understand what we go through when they do not have the disease. That is one of the most frustrating part of having myasthenia. Other people (including the doctors) don't understand what we are feeling.

March 21
A MGteam Member

I went for what seemed like forever to get close to a dx. My symptoms started after my last child and she was around 13 or 14 when I finally got dx. By then I'd seen and had so many doctors involved in my case and none was closer than the next until my neurologist switched clinics and I got a new one because she left. And that younger doctor wasn't overwhelmed with my symptoms. She gave me an emg and I was dx'd 2 or 3 weeks later. Put on cellcept and my life steadily went back to normal. I was dx'd ocular MG. Fast-forward today and Ive been redxd with gmg.
Nothing is more disheartening than to be handed over and over to doctors who either dont know or its just not ever gonna be their specialty.
Hang In there Diane. We all know stress can bring on some nasty flares. And it would be best not to let yourself get too upset.
I hope you're calming down and getting plenty of rest. Don't fight the naps.

February 27
A MGteam Member

Same thing happened to me for years but a new dr came into practice where my neurologist was and she finally diagnosed me with sero neg mg. Sometimes i still have legs give out on me especially in the mornings. Now i go to muscular neurologist shes has me on meds that helps.

February 26
A MGteam Member

Diane - this is how my MG started. I was at physical therapy in Oct 2025 doing exercise because I had fractured my femur in Aug and all of a sudden my leg buckled and I fell. That night I couldn’t get myself into bed I was so weak and I noticed all my pictures were crooked on the wall which they were not, next day my eye lid was droopy went to ER thinking it was a stroke bc my left arm flopped down I couldn’t hold it up and my speech was slurry. I did test positive with MG when they did the antibody test. Your symptoms are a lot like mine but you didn’t test positive but you can still have the disease. You need to find a Neurologist that specializes in MG not just a neurologist and get the help you need and not listen to those other quacks - be your own advocate.

February 25

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