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| Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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07-22-2009, 11:30 AM
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Well, my neuro dr has assured me I definitely have "limbic" MG, & it will not progress to bulbar ("unlikely")...guess, after reading the forum, my paranoia engaged & I expected a different response, last visit I thought he was backpedaling cuz of my sero-negativity (positive decremental EMG)...brought him the article by Dr Angela Vincent & he also hopes she comes up with more definitive testing for us all....
Well, now he has prescribed IVIG for me & I'm trying to get my mind wrapped 'round it, wasn't expecting it so soon...the Mestinon has helped some, but I'm still unable to do much activity, tho I am very functional, at least 'til my recent carpal tunnel surgery....(2nd time & the nerves were badly damaged according to the ortho doc; he can't explain it, or the severe incapacitating nerve pain I'm having...so now it's off to a neuro surgeon...never ends) ... Well, I do feel reasonably lucky to have gotten to this age before it all fell apart..now I know in hindsight why I was always so tired & unable to run or walk very far.... another reason not to retire....my situation pales to most of yours & I realize just how devastating it is for you & hope you all are doing better & the medical establishment finds better treatments for this debilitating disease...... Dottie |
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07-22-2009, 03:12 PM
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Dottie
Sorry for all you have been through, & hope your IVIG treatment will help. I am set up with a neuro surgeon for my nerve & muscle biopsies on the 28th. I am looking for someone that has had these, to give me a heads up for what I am in for. Mary
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Mary . |
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| "Thanks for this!" says: | korbi_doc (07-23-2009) |
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07-22-2009, 07:04 PM
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Dottie, Glad to see the ball is rolling and you are getting the help you need. I am soooo tired of Dr.s right now I could just scream, having flashbacks to when I was first DXed 18 years ago..LOL
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| "Thanks for this!" says: | korbi_doc (07-23-2009) |
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07-23-2009, 10:01 AM
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Hey Dottie,
Glad to hear you finally have a diagnoses. I haven't had IVIG, only plasma pheresis, but I'm sure it's going to help you as it has many here. Sorry you are having such a terrible time after the surgery. I hope they find out whats causing all the pain. Please keep us posted. Take care.  Hugs, Pat |
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| "Thanks for this!" says: | korbi_doc (07-23-2009) |
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