Myasthenia Gravis News Forums Forums Research and Clinical Trials Accurate Count of People With MG

  • Andy Coyne

    August 12, 2022 at 4:04 pm

    I think more awareness in the medical profession is critical. The number of people on the various Facebook groups whose neurologist tell them a positive test isn’t positive enough is astonishing! The numbers turned away as having anxiety symptoms or something else despite having very sound diagnostic indicators including emg and achr positive.  Things have to change!

    insuspect that the real number is likely to be 10 times that commonly postulated!

    • Andy Coyne

      August 17, 2022 at 3:00 pm

      I would also say that if the symptoms are so mild or asymptomatic then you wouldn’t count them probably anyway. They may have a medical event that exposes it and then of course you would count them.

  • Jonathan A

    August 14, 2022 at 7:43 pm

    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.

  • Jeff Doyle

    August 24, 2022 at 10:09 pm

    I think that a sudden onset of double vision is Myasthenia until proven otherwise.

  • paul spychalski

    August 26, 2022 at 7:30 pm

    I went for about 35 years and didn’t know I had it. They said I had Ataxia, then Vertigo, them Meiners disease. I’m still looking for someone who knows MG.

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