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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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10-20-2016, 07:04 PM | #21 | ||
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Junior Member
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I went as high as 180mg 6 times day or every 4hrs when I was in my worst part of my crisis I'm now down to Slow Release "SR" 180 twice a day or e every 12hrs and trying to get off PlasmaPherisis after 82 treatments, I have to get it done weekly. I finally got off Preds but still on 200mg of Imuran daily...
I'm now going back to IvIg to try to get off PlasmaPherisis, I'm finding it very harsh on my body, I'm having a lot of muscles and joints PAIN and my Doc thinks it could be the plasma exchange having secondary effects so I'm hoping that IvIg will help to bring the pain down a bit... If all this keeps up I might make the BIG move and do a STEM CELL treatment in the new year this can't go on for ever!!! My Specialist has cured 8 out of 8 patients so far, I did speak to 2 of them and feel great, no more needs for medications nor any types of treatment!!!!!!! I'm just to big of a CHICKEN to do it! |
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10-21-2016, 12:14 PM | #22 | ||
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10-21-2016, 02:41 PM | #23 | ||
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Junior Member
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Hi ttmmkk001,
Thanks for your concern, when my friends and other people see me they all say how good and well I look, I have to say I do feel great and back to work 5 days a week for 30hrs +/- and do pretty well all I want, I had to learn or reprogram myself to my capabilities, I'd have to say that I'm back to 85% to what I was. I've been very lucky not to fall back into a CRISIS so far like I said I listen to my body.i do push myself a lot over my limits then take a stance back for a few days, I want my body to build up strength and it seems to work!!! It's just I can't get away from my PlasmaPherisis otherwise i feel great that's what's keeping a float right now but for how much longer???? I'm still young at 53 soon so if STEM CELL good bring back in REMISSION I'd be a happy camper. |
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10-22-2016, 01:21 PM | #24 | ||
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Junior Member
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It's been a week since the extraction. Still a lot of pain. I just went to the dentist office. He confirmed that i have a dry socket. It seems like everything is going wrong at the moment.
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10-22-2016, 02:24 PM | #25 | ||
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Junior Member
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Just look at the bright side it could be a lot worse...take it one day at the time and try not to panic or get to anxious it makes things a lot WORSE! especially if you think you might have MG, try to relax and take it in small strides...it took me a while to slow things down and feel much better, anxiety can play some weird tricks on you.
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10-22-2016, 02:28 PM | #26 | ||
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10-22-2016, 03:01 PM | #27 | ||
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Junior Member
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Go rent a good movie and order in a good pizza and enjoy...as we're speaking I'm doing IVIG I'm on my last bottle should be done around 4:30 o make sure you have the Pizza on time, I'll be right over!
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10-22-2016, 03:14 PM | #28 | ||
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