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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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09-23-2016, 10:16 PM | #1 | ||
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Went to a new neurologist.
My blood test is still negative, yet he agrees something is wrong. Mostly, he declared, and pushed that I should just go to the Mayo Clinic to get completely tested and diagnosed. Otherwise, he said, if I really want, he will work with me, but without a proven diagnosis, was I really ready to be put on Imuran? Is that really how they start? Slap the scary immunosuppressants on you first? I am 1,200 miles from the Mayo Clinic. I don't have money for plane fare. I don't have money for staying in a hotel. I cannot sleep in a bed, I need a decent recliner so I can stay halfway upright (pile of pillows on bed does NOT work) or I can't breathe, so I can't stay in just any hotel. I have no one to go with me on the trip since hubby would lose his job and we have a 14 year old daughter to take care of, and since I have vision, balance, breathing, back, knee, etc problems as well, I cannot go alone. So, even if I start working on getting to the Mayo Clinic, it will easily be 6 months to a year before it might happen. So, I'm wondering, is starting off with Imuran typical, or is this guy just trying to scare me off permanently so I won't be his problem? |
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