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Gosh, Dave, you are one EXTREMELY LUCKY GUY … to come across a medical “professional” who recognized your OBVIOUS MG SYMPTOMS and diagnosed you. My medical angel was a third floor nurse, at my second of five hospitals, who recognized that I had ACUTE OCULAR MG as well as EVERY symptom of GENERALIZED MG.
I was attempting to watch TV and she recognized what I was trying to do … with one eye closed, my left eyelid held up by my weak left hand, held up by my weak right hand. She wrote on my paper pad in reply (first hospital gave me hearing and speech loss due to antibiotic side effects) and said that she knew exactly what I had, as other patients right there at St. Joseph’s Hospital had the same symptoms that I wrote on my paper pad.
She said I had MG, and got me tested, IVIGed, and on CELLCEPT and MESTINON. It took me 8 months before I could find a properly educated professional that knew about MG, and I had already, in my search, told every doctor, who saw me, that my grandmother died of LUPUS, which is also a neuro-muscular disease.
My new Neurologist, Dr. Kilian, is worth his weight in GOLD, does not look at me as if I had three heads, does not write me up as a POOR HISTORIAN ( no one can have 9 symptoms and only one disease), and at my first appointment, after 5 months in 5 hospitals, Dr. Kilian, gave me my first physical in 30 years, and tested by my strength in various muscles, even using the rubber knee hammer (which I had not seen in use in decades). When you find a GREAT DOCTOR or NURSE, never let them go. I had already been seen by an eye doctor, and in the first hospital by two neurologists and a neurosurgeon, who apparently were never told in med school … about MG.