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The TRUE ANSWER to how many MYASTHENIA GRAVIS patients are diagnosed and alive is much GREATER THAN THOUGHT.
I regularly try to keep up with my MG bookmarked websites, and attend by ZOOM my four MG support groups at every opportunity. I heard or read that there are 60,000 MG patients in the US and 12,000 patients in the UK.
It took me 8 months to be tested and diagnosed with ACUTE OCULAR MG and GENERALIZED MYASTHENIA GRAVIS. NOT A SINGLE DOCTOR, including THREE “neurologists ????” at the first hospital could diagnose me and give me Thymus and Antibodies tests. In the 60 plus MG personal stories that I have read so far, many MG patients start showing symptoms in high school, and are not diagnosed till they are mothers. I was diagnosed by a third floor nurse at the second hospital. My ANTIBODIES scores were through the roof …Binding 8.7 8.1 and later 3.5 (after 5 days of IVIG) Blocking was 50% and 59%. Modulating was 81%.
From my 4 support groups, MG books/bios that I bought and read, and websites … there are tons of people still waiting in the wings trying to get appointments, tests, and a diagnosis. Also there have been members on my ZOOMS that were accused of being sero-negative ..or their doctors, charging medical plans and no longer treating some MG patients … or agreeing to doing MG tests.
So we are highly UNDER COUNTED … as the doctors and even the Neurologists that have seen me, were clueless/inproperly educated … and do not know what MG means in ENGLISH. My saving Neurologist … that the diagnosing nurse got me connected to, tested, and through my five days of IVIG’s … Dr. Meredith Wicklund, RECOGNIZED MYASTHENIA GRAVIS … and her specialty was Dementia … but Dr. Wicklund knew her stuff … and got me safely through tests, diagnosis, meds, and 5 days of IVIGs. THREE CHEERS TO PROPERLY EDUCATED DOCTORS.
My new Myasthenia Gravis DOCTOR is an old school NEUROLOGIST from the U of M in ANN ARBOR. He has been around the block and the hospital wards. He knew all the symptoms as I tried to tell my “situation” to my new neurologist. He did not look at me, as if I had THREE HEADS, or write me up as “A DIFFICULT HISTORIAN” and “TANGENTIAL”. He understands that my 8 or 9 very obvious symptoms are ONE DISEASE … MG. I wish EVERY doctor had had a medical course in complete SYMPTOM DIAGNOSING. I had a CODE RED called on me …. ACUTE HYPERCAPNIC RESPIRATORY FAILURE due to ANESTHESIA. ALL STRIPES RARE DISEASE FOUNDATION has found so far 792 medical documents for me … it was an overdose of sedatives … PROPOFOL and ROCURONIUM to an undiagnosed MG patient.