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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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01-03-2021, 02:24 PM | #1 | ||
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Junior Member
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Hello,
I haven’t been in here in a while but I’ve had MG for 8 years now, seronegative, although never tested for LRP4. I was diagnosed 5 years ago bay neuro ophthalmologist due to positive mestinon response. I’m currently in Bose Idaho and looking for a seronegative friendly neurologist in the Boise Idaho area. Thanks. |
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04-19-2021, 08:04 PM | #2 | ||
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Member
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I so so feel for you wanting a better doctor. I started on Mestinon thankfully in July of 08. I was already so weak my diet had become lousy cause I couldn’t walk a full grocery store.. I had an attack during a really hot shower affecting breathing and was tried with Mestinon in hospital. Could you make it to Mayo Clinic in Minn. ? They did a lot for me. They discovered something new each time I was there.. I have a young neuro since 2009 who keeps giving me Mestinon but won’t do more. A senior doctor actually sent me home from hospital 2 years ago still unable to stand up from a chair.. This incident has my daughter traumatized and scared about our coming trip to Mayo Clinic. Sculptor44
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