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Myasthenia Gravis

Autoimmune Diseases | Last Active: May 31 9:29am | Replies (20)

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@wcburns2

Cellcept was not effective in preventing eye droop or the “brain-nerve-muscle” communication caused by MG. It is being used to slow the Pemphigoid disease progression of my corneas. To have both is even more rare.
I had heard that Cellcept is a long term use (probably rest of my life) option because prednisone isn’t. although not the same drug may help fight the same battles. Since drugs that seemed to help you didn’t help me, I was curious if cellcept might help you too.

So far I am lucky, no double vision, no swallowing problems and other muscles do get the signals from brain. Sounds like yours may be moving to other parts of your body and that puts your condition at a whole new level. Keep fighting learning and listening. It’s all any of us can do. It’s hard to stay positive all the time especially when my issue is constant. So I try and remind myself to be thankful for the so many other positives things I do have.
My eye droop began Dec of 2020 and has stayed ocular only. I am going to engage another set of doctors at Mayo to continue my fight and kearn more. Have you been, or are you being, treated at the Mayo Clinic?

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Replies to "Cellcept was not effective in preventing eye droop or the “brain-nerve-muscle” communication caused by MG. It..."

No, I am in the Detroit area so I am seeing Dr. Grover at Henry Ford who seems to have a good knowledge of the disease
I had initially seen virtually a doctor from Northwestern Hosp in Chicago where my daughter-in-law works in neurology. Then I tried a University of Michigan doctor, who just seemed a bit too unconcerned. Dr. Grover doesn't rush things and is very thorough which amazes me in this current medical climate.
Hope Mayo can help you.