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Anyone been treated at Mayo Clinic for Ocular Myasthenia Gravis?
Autoimmune Diseases | Last Active: Sep 14 6:47am | Replies (35)Comment receiving replies
Had tests for ocular myasthenia Gravis and they were negative per local doctor consultation with Mayo. Dr still thinks I have ocular MG . So had tests done for 2nd opinion at a different medical school. They said not likely. Now 18 months later I still am being told by my local PCP and local optometrist that my eyelid drooping, inability to focus at times, along with swallow difficulties and imbalance when ambulating are strong signs of ocular MG. What can I do to find out? I live in a rural community with limited resources and so have to go 100 miles or so to find a Dr. for this.
Replies to "Had tests for ocular myasthenia Gravis and they were negative per local doctor consultation with Mayo...."
@retiredx3 If you’re having trouble finding a specialist for OMG, you could call GARD-the genetics and rare diseases organization: https://rarediseases.info.nih.gov/ or NORD- https://rarediseases.org/. the National Organization for Rare Disorders. Both groups keep lists of doctors who may be able to help. Let me know if you have any success!
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Find a doctor who specializes in seronegative myasthenia gravis. I’ve just been dx’d. I’m not sure there isn’t something going on that’s more rare for most of us but my understanding is that many of the treatments are similar. At least prednisone is often used in many of the autoimmune diseases. Eyewiki has differential diagnosis to make sure you’ve been tested for & and the myasthenia gravis foundation of America has a seronegative support group I’m hoping to attend but haven’t yet. Good luck. There’s nothing quite like floating in the ambiguity of rare diagnosis. I’m glad at least your local docs are behind you. 💪💪💪💪💪