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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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12-28-2008, 12:08 PM | #21 | ||
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12-28-2008, 11:40 PM | #22 | ||
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Thanks USMC, Erin, and others for your contributions. I have been pleasantly distracted with the holidays but my pending surgery is still in the back of my mind as I try to enjoy the company of my family.
Based on your feedback (you really have no idea how much this forum is helping me ), I am ok with knowing that there may be some discomfort immediately after surgery, and as the days go by, I'm accepting this whole procedure more and more. Strange as it may seem, my double vision has cleared up some in the past couple of days. I've had it since Oct. 22. Any of you experience your symptoms coming and going? This is all still new to me. And as for the surgery, how difficult is it to get around after the procedure? Can you bend over (to reach your toes), etc without pain? I'm just wondering how it will be to do everyday tasks like dressing and tying shoes and such. |
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12-28-2008, 11:42 PM | #23 | ||
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Yes Missy, please elaborate on your statement. I'd hate to think I'd be having this surgery for nothing.
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12-29-2008, 10:36 AM | #24 | ||
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12-29-2008, 05:10 PM | #25 | ||
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I asked my neuro, who works for a major university medical center and research center. Improvements are possible, yes, but a true MEDICATION FREE remission (which is defined by a total lack of symptoms after ALL medications are withdrawn that lasts for more than 12 months) are quite rare.
I've been busy posting in message boards for almost 10 years now and have literally "met" hundreds of MG patients both online and in person. None have achieved the elusive DRUG FREE remission. I do realize that people who have achieved remission don't usually spend time on message boards, so my personal experiences are likely skewed. I happened upon another woman on a different type of message board who HAS achieved remission, and for over 25 years, too. She, btw, was diagnosed/had surgery at age 8. It took her about 10 years before she went into remission but she's stayed good since. She's the only person I've ever met who has had remission. Expectations vary from person to person. I have been totally symptom free for a stretch of 2.5 years (several years ago) but was taking lots of meds, so I don't consider it a remission. I know others who shout from the rooftops that they are "in remission" when they simply vacuum the carpet one time. All is relative in the world of symptom watching! LOL Hope this helps. Missy |
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