Quote:
Originally Posted by KatG11
Hii AnneB3,
I was just diagnosed with MG last month, but have had symptoms for more than a year. Still trying to understand it all, and consider my symptoms fairly mild right now....started with a droopy left eyelid that comes and goes, and general fatigue. I also have muscle weakness in arms & legs after activity, and have a little trouble swallowing from time to time (which started a few months ago). Sometimes I feel like I can't catch my breath or get a full breath of air, but it's hard for me to tell if it's just anxiety or part of the MG. This happens mostly at night when I'm trying to sleep, and I wonder if that's when I am worrying more b/c of the stress of the diagnosis.
I'm hoping that my symptoms don't worsen, and am just trying to do my research and prepare myself for whatever the future may hold. Currently taking only Mestinon, 30mg every 3-5 hours.
Take care
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Our stories are very similar; I was diagnosed in May with a mild case of MG. I struggle with the same thing - it's really hard to know what's MG related versus what is anxiety or something else. Last night I went out to dinner with friends and I was laughing and smiling a lot (a good thing!) but my smile muslces actually started to feel tired. Was I just laughing/smiling more than usual or was it MG? I've had the same breathing thing too - feeling like it's hard to take a full breath but not sure if it was MG or anxiety. I'm trying to listen to my body but since I'm young and otherwise very healthy and active, I don't want to make more of this than it is (since I was diagnosed with a mild case - I know that for others MG is certainly a very big deal and not to be taken lightly), if that makes sense. Maybe we can share tips as we start to figure it out
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I'm only Mestinon right now too. The uncertainty of what MG may bring in the future is a challenge but I've also tried to use it as motivation to take the absolute best care of myself that I can. I am strict about going to bed on time, I don't drink, and I eat only whole foods. Those have certainly been really positive changes for me.