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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#1 | ||
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Junior Member
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I've been back to work now since Feb 2016, I started progressively and now working Mon to Friday 8am to 3pm 30hrs/week, for me that alone is therapy on its own, just the fact of being with people and freinds helps me forget about a lot of things...I stayed home for 10 months and thaught I was going to go CRAZY! to much time to think...
I'm on a heavy dose of Mestinon every 3hrs and Imuran once a day, Mestinon Timespan at bedtime and IVIg every 3 weeks, it keeps me a float so far. I don't do any or very little physical work it's all mental, computer, email and lots of phone calls which does get to me if I over do things "talking" I'm having a lot of bulbur symptoms which really affects my speech, my swallowing is good but all my fascial muscles, mouth, cheeks, tung and lips get numb... I take time outs and I get back on track but as my day goes on after lunch things can get really bad so when 3 pm comes I'm ready to go home and have some downtime, sometimes i take a nap for an hour or so. I feel that 6hrs is plenty for my condition, it took me a long time to be able to get to this point and hopefully hang on, I listen to.my body I'd like to be able to do more I use to work 60hrs a week, I'm enjoying what I'm doing and my boss is ok with it so far. All I can say is that I encourage all you MG'ers to keep busy at doing something you like at your pace it really helps to.make you forget about things and gives you a sense of acceptance or contributing to something constructive by day's end...it's really helped me emotionally. |
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#2 | ||
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Junior Member
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This is super helpful—thank you!
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"Thanks for this!" says: | AnnieB3 (07-06-2017) |
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#3 | ||
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Junior Member
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I live in Arizona, too. Phoenix area. The hot months really drag me down, but I spend as much time as possible in the air conditioning.
My job can vary from active to sedentary. I really fell off when I started presenting symptoms: ptosis, difficulty with swallowing, weakness, then unsteady gait. My employer asked me to go onto the Disability program (union job with a big company) until I got diagnosis, about 5 weeks. After spending a week in the hospital getting plasmapharesis, I spent another two weeks gaining my strength and co-ordination back. I had to have a meeting with management to get the OK to go back, and have been working full time plus necessary overtime since. I've done 50 to 60 hour weeks regularly. The weekends usually involve a lot of sleeping. I'm not in very good physical shape, rather overweight, but I seem to do all right. I need to work as much as I can to make the bills, so I do what I have to. |
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"Thanks for this!" says: | AnnieB3 (07-06-2017) |
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#4 | ||
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Junior Member
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Arizona Chapter of the Myasthenia Gravis Foundation
They're inactive until September, but there are phone numbers and e-mail addresses. If you can make it to either Phoenix or Tucson meetings, there may be some help with pointing you toward resources. |
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"Thanks for this!" says: | AnnieB3 (08-31-2017) |
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#5 | ||
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Junior Member
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I guess I'm one of the fortunate ones that can still work. I was diagnosed 3 or 4years ago right after Thanksgiving. I had severe ptosis of the right eye. It was brought on about a week after getting a flu shot and taking antibiotics for a cough and sinus infections that I had for 2 months so I figure one of them triggered my MG. I hit the mestinon hard for about 4 months before my ptosis gradually cleared up and I have been mostly in remission since. I have been mestinon free for about 2 years with the exception of when I start feeling off like last night when my breathing (Throat tightened up) made it hard for me to sleep after driving from Boise to Salt Lake and then back to Boise in 13 hours for work. I quit seeing the neuro after she said I was misdiagnosed. She got my labs from the previous neuro and she did did a 180 with my labs in hand. I quit seeing her but will need to go back if I need anymore refills of mestinon. I am always tired in the evening though and my muscles are always sore. I have heard that muscle weakness doesn't mean muscle soreness so i guess I can't put that one on MG.
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"Thanks for this!" says: | AnnieB3 (08-31-2017) |
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#6 | ||
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Guest
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I can't, and still struggling to accept that.
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"Thanks for this!" says: | ErinBear (09-06-2017) |
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