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

 
 
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Old 06-21-2013, 05:05 PM #5
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cait24 cait24 is offline
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Join Date: Sep 2012
Location: Newtown, PA
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cait24 cait24 is offline
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Join Date: Sep 2012
Location: Newtown, PA
Posts: 709
10 yr Member
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Try taking mestinon with a small snack an hour before your meal so you are strongest when you need to eat, chew and swallow. That is what I have to do. I am technically working fulltime. I work Mon & tuesday. I take 1 vacation day every wednesday and then work Thursday and Friday. This is the only way I can make it through the week. When I worked 5 days straight, my symptoms just get progressively worse until I started having breathing issues and had to go on disability for a while.

Would your boss be cooperative with a reduces work week like that?

Also, I work on a computer all day too. I had to get a larger computer screen and adjust the image resolution to high so I did not strain my eyes. Overworking one muscle can lead to weakness of an entirely different muscle. It is called the Mary Walker phenomenon.

I am so tired too. Some days I sleep 16 hours a day. You need to rest your body and let some of the work wait. If you feel good today and do too much, you pay for it tomorrow or even for a week. I had the pregnisone bruising too, it subsided after a month.

My eye symptoms are the least predictable and do not respond as well to the medication. My neuro-optomologist thought that was pretty typical of MG. I got prisms in my glasses and it really helped. You may want to try them at your next eye doctor visit.

Hang in there, I know it is frustrating
kathie
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