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THANKS AMY for working for a rare disease foundation. By googling for support groups, I found two and they are continuing to be great … trying to pry my own medical records, tests, consults, and results out so I can see what they did to me … and how they were screwing around and were never able to diagnose my MYASTHENIA GRAVIS and OCULAR MG ever for 8 months. Every doctor failed, but a third floor nurse at the local DIGNITY HOSPITAL, saw my symptoms, LISTENED, and got me tested, diagnosed formally, IVIGed and medicated.
Both PICNIC HEALTH RARE DISEASES and ALLSTRIPES RARE DISEASES are continuing to find my medical records and tests, even letting me know that I was drugged with MORPHINE and FENTANYL, at the first BANNER Hospital, that I still don’t know the whole story of. They sent me to a DIGNITY Hospital as a LTAC, instead of diagnosing my MG. So learn about RARE DISEASE RESEARCH groups. If you share your story with them to further research, maybe you too can receive information to help you as well. THREE THUMBS UP FOR RESEARCH !! Thanks Amy