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Old 07-15-2017, 09:55 AM #1
ErinBear ErinBear is offline
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Join Date: Jul 2014
Location: California
Posts: 162
8 yr Member
ErinBear ErinBear is offline
Member
 
Join Date: Jul 2014
Location: California
Posts: 162
8 yr Member
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Hi Hope4Me,

As MG_Kat33 said, everyone is different. I do not technically have a diagnosis of MG, but it still seems possible that I could have it. We have had trouble diagnosing my generalized weakness. I'll respond anyway.

For me, I do not generally have pain in my arms and legs. Generally, I only have weakness. Yes, sometimes I do have soreness when I have to push myself too hard to try to walk or do other activities when my muscles are too weak. I think this is not uncommon. For me, my ability to breathe is also a big concern. I struggle to breathe as my symptoms progress, as the muscles in my chest are weak. I always struggle with breathing at some level, but it gets worse as my weakness is worse, and I can end up in the hospital needing treatment.

In my case, I always have symptoms, but they vary in intensity. Some days are better than others. Some days are fairly good, and I am not too troubled by it, although I haven't had a good day like that in quite awhile. I also feel better in the morning, and I get worse as the day progresses. I am much worse in the evening, for instance. I am also worse when the weather is hot, like it will be here this weekend.

For me, yes, my symptoms were not as bad at the beginning as they are now. We are having to do more intensive treatments more regularly. I have plasmapheresis several times a week, just trying to stay on an even keel and stay out of the hospital. I hope things will get better and more stable at some point.

My visual symptoms vary, just like my other symptoms. My eyes do better in the morning, just like the other symptoms I have, and I have more problems with my vision and ptosis as the day wears on and I grow more tired. This, too, is also worse in hot weather.

With my ptosis, at least for me, it does not always droop. When I first wake up in the morning, my left eye is pretty good. It is the one that shows the ptosis the most. It gets worse as the day goes along. Actually, both eyes can droop, but the left eye is worse than the right and can mostly cover the eye.

Everyone is different. Somebody else's experiences are undoubtedly different than mine. Your symptoms are unique to you, too. Please take good care of yourself, and hang in there!

Take care,
Erin
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"Thanks for this!" says:
AnnieB3 (07-16-2017)
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