Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


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Old 01-28-2014, 11:54 PM #5
bny806 bny806 is offline
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Join Date: Nov 2011
Posts: 576
10 yr Member
bny806 bny806 is offline
Member
 
Join Date: Nov 2011
Posts: 576
10 yr Member
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hello! and welcome, sorry that you have to be here though yes, many people with MG etc can look normal to others, it's hard to explain the weakness I feel like.. It wasn't until I totally crashed that I feel like anyone took me seriously.. I ended up in the hospital for a week, got IVIG and then finally felt like myself again after being sick for 6 months or so..
I look back at pictures of myself and I just look awful - my face/eyes were so droopy.. like my skin was melting off my face, though to others, I don't think they could really tell much.. though looking back they can.. I am still techincally a mystery (possible LEMS being high on the list, as is MG), but I get IVIG every 3 weeks.. I do have the eyelid thing in the morning.. it takes me a few trys at blinking before my eyelids work, same with breathing muscles and well all of them.. I look just scary with the droopy eyelids during an exacerbation first thing in the morning...

I used to tell the drs who doubted me, that the best case scenario would be that it was all in my head right? You can just give me a pill for that...... but turns out it's not just in my head!

Good luck, Glad your getting testing at least!
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