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


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Old 06-26-2014, 10:43 PM #1
bny806 bny806 is offline
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Join Date: Nov 2011
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10 yr Member
bny806 bny806 is offline
Member
 
Join Date: Nov 2011
Posts: 576
10 yr Member
Default Strange symptoms

Ok, you guys are very knowledgeable, so I have a mystery for you: I have been a mystery with myasthenic like symptoms for over 3 years now.. getting IVIG every 3 weeks.. I crashed, couldn't breathe, droopy eyelids the whole nine yards 3 years ago.. IVIG saved me... so LEMS is at the top of their list.. though I have some sensory issues too (confirmed SFN).. I have had strange things happen sometimes, and I think the heat makes it all worse.. but

I get all over muscle weakness, feels like an elephant on my chest, my pulse ox even goes down, heart rate goes up.. I'll get a headache, roaring in my ears(feels like my head is in a bucket), I start feeling disoriented... usually It causes me GI upset as well.. Once I sit down and rest for 15 minutes, the headache, roaring, breathing all of that improves.. though I will remain weaker.. this only happens during exacerbations (the kind that last days).. It's pretty scary and miserable
Thanks for any insight/opinons
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