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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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Hi all,
Well, I have two full diagnoses and one probable diagnosis. My rheum diagnosed me yesterday with undifferentiated connective tissue disease (UCTD) and Fibromyalgia. YEA!, what a combo. On top of that, my neuro is starting me on a med trial for MG. I have had antibodies come back positive and my thymus is enlarged. My forearm SF EMG was negative, of course. So now we are starting Mestinon as a trial. She is starting me on 30 mg twice daily. Now, according to the drug manuals that is the lowest starting dose. But from what I have read, most MGers need to have it at least every 6 hours. This initial dose seems really low. My question is how am I supposed to have an effective trial if I am on such a low dose? I am also concerned that if/when I need to increase, I am going to have a buy a new script and I see this going on and on. Any suggestions? Also, is it common to not see your neurologist for 3 months after starting a trial? Any help would be appreciated. Hope you all are well and strong today! |
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