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Members rallied around the frustration of not getting a proper MG diagnosis, sharing their own long journeys that sometimes lasted years... Read more
That's how I was diagnosed with Ocular MG , taking Pyridostigmine ( generic for Mestinon) eye has opened and I was wearing prisoms since diagnosed in 2024 , now double vision is gone , don't know if its because I'm taking the meds or in remission , sometimes that can last a month or two then bam , I go to my Neurologist in June but right now I'm enjoying it , just wish I didn't have this wrinkle on my retina membrane it throws my balance off and makes me dizzy sometimes❤
Research your questions become your own advocate , not a lot of Neurologist know what we are going through , I follow the Myasthenia Warrior she is living with Myasthenia Gravis she has great tips , shes on fb.❤
Hi, Cindy! I think you are not well treated; might be you need more exams to reach a proper diagnosis.
MG has very different ways of evolution, but with correct clinical and paraclinical exams you can know the accurate diagnosis. Cheers! And hope!!!!
That diagnostic journey sounds genuinely exhausting, and the frustration is completely valid. MG is notoriously tricky to pin down — it's sometimes called the "snowflake disease" because it shows up so differently in different people.
The challenge is that no single test always gives a clear answer. A full diagnostic Show Full Answer
Remember, that 50% of all Dr's graduated in the lower 50% of their class. I feel it is almost criminal for MG blood testing not to be included in some of the first diagnostic tests run. So unfair to you and others. I am glad you are on the right track finally. Take care. Be your own advocate and research. Multiple surgeries so wrong.
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