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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#11 | ||
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Junior Member
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Jackieinbama: I am SharonT from Milton, Fla. You are the nearest person to me that I have seen on these posts. I was diagnosed with MG at UAB in Birmingham by a group of wonderful neuromuscular disease specialists. It took me 5 months to be diagnosed which is quick according to these posts. I have good days and bad days too. I can no longer work as an Icu nurse and am now getting SSD as of this month. However, My longterm disability at work is trying to say I can work parttime and that is a joke. I can't even walk 50 feet on a good day without getting severely short of breath and have to use a WC or scooter in stores. My neck muscles get very tired when sitting for long periods too. When I get very tired the double vision gets more frequent too. It is very hard to explain this to people who never see you or do and say "Oh, you look good and healthy." Wish you luck in getting a diagnosis. SharonT
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#12 | ||
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Junior Member
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Hi again Jackie,
I know what you are saying about getting bored. I still do alot - I just try to space it out and rest in between. I still work full-time...I would go mad if I did nothing but I think part-time would be much better for me. I am able to continue working because of the medications and IVIg. When I was taking nothing, I felt like you do. Heat and humidity are the worst. I live in Minnesota so things are great in the Winter but believe it or not, it is very humid and can be hot here in the Summer. While I wouldn't say the treatments for MG are delightful, I sure feel better with them than I did without them. I can breathe and swallow and get around...I don't go shopping much. I used to be very physically active and fit - it is hard to have that taken away... I have started going to the Y occasionally and can actually ride the exercise bike and do some weights now. Hang in there... Gabe |
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