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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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Junior Member
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Long time, no write, huh. I finished up my contract and have been home since mid-Nov and I used to check these posts every day at work...I missed you guys.
Anyway, I gained my muscle biopsy results this month. The muscle fibers and structure are abnormal. The irregularity supports an underling myasthenic syndrome. They think it best resembles limb-girdle myasthenia gravis. That's not my official diagnosis (yet) though because it's not a cookie cutter match. I am going to a UCLA neuro specialist in January to do some follow up testing to get an exact diagnosis. I felt that was good news, since all my other prior tests were negative. We're this close to an answer (said while I pinch my fingers together like I'm holding a little marshmello). It would make sense to me if it is limb-girdle MG because I have every symptom. My legs, arms and trunk get the most weak and all my major joints (shoulder, hips, pelvis) are loose. If that's the case then I'll be switch medication, which is probably a good idea because I seem to be having less success with the Mestinon. I am still WAY better than if I didn't take it, but I've noticed an increase in flare ups. I am getting fatigued and weak faster then I was. Luckly right now I am off of work, so I've been able to rest whenever needed. How are all of you doing? ![]() |
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