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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#1 | ||
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Have been doing a LOT of thinking today.
It´s been really really tough to cope with fluctuating symptoms, fluctuating diagnoses and a sudden remission without ever having had a positive test in the first place! Now just how ridiculous is that?!!....(I even posted on emotional support today) Sure, some things like just yesterday, washing my hair I had to prop my elbows up on the shower window to spare the deltoids for rapid fatiguing. Yet on the same day I went out to play football with my young son. Tonight I was able to read 3 bedtime stories before sounding´dysarthic´instead of just 3 lines. For that and so many other things I am incredibly grateful... ![]() All in all I just need to go away and live for now..... be in the present moment and make the most of it all. I´ll be back in a couple of months asking for advice on how to prepare for my 3 hour testing of RNS, EMG & SFEMG in early September. ![]() ![]() ![]() ![]() ![]() |
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#2 | |||
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Junior Member
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I hear you with regards to the frustrations on playing with the young ones. I have two little boys ages 3 and 6, and while my heart leaps to play with them, on the hot days my body keeps me still and resting.
Be well and know that we're here. Check back any time! (Maybe I'll even know something by then..... Hear ya there, too....) RP
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.................................................. ........... 37yo, clinically diagnosed MG Aug 2012 Started Mestinon June 2012 *mestinon my wonder drug!* .................................................. ............. |
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