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| Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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05-07-2008, 07:06 PM
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Hi, ((((hugs))))) It's going to be alright, honest. I know you're scared, but the good news is that you just put you on Mestinon, and you aren't in the hospital, and even if you were, you'll be okay. I'm on Mestinon, Prednisone, Cyclosporine, and provigil.
It takes a while for all the meds to get worked out, and for the doctors to figure out what your body needs in order to feel better. How were you diagnosed? Please if you have any questions, no matter how small they may seem, please ask. I was diagnosed in 2004 through a tensilon. The important thing to remember, you'll get through this, but it will take time. Much love and Prayers Lizzie |
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05-08-2008, 03:04 PM
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Lizzie- You are a doll! I feel like pulling the covers up and hiding. I've had symptoms for 12-15 years but it wasn't until it hit my eyes that they figured it out. I don't test positive for the antibodies...is that really possible?
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05-08-2008, 03:57 PM
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Awe..Hey, it really is going to be all right. And yes it is very possible to test negative, not only to the blood work, but to all of the tests, and still have MG.
And believe it or not, some people, yours truly here, have tested neg with the blood and then 4 years later, have it show up on my labs. So go figure. From what I understand, and from what most experts say is that it really all depends on the amount of antibodies that are in the blood stream at the time of testing. Same with the emg's and like tests, if you have the test during a "non flaring" time, and you are feeling strong, it usually won't show up. These are the reasons it is so hard to test, and diagnose. I know of one person, who has tested negative to everything, and is in a severe state, to the point of needing a powerchair, and can barely hold himself up, and all tests, except for the tensilon came back negative. So it is indeed complicated. Each case is so different. One expert said the only thing that was consistant with Myasthenia is it's inconsistancies. And that is from someone who deals with it on a daily bases in the medical community. Same with treatment, each case reacts differently. Some only need Mestinon, others need Prenisone and Mestinon, and still others need those, and other treatments like, cellcept, cyclosporine, imuran, ivig, plasma etc. It's frustrating for certain. You'll be okay, it'll just take a while. the best thing you can do is read everything you can about it. and Ask away... I'm not sure why it says I'm a junior member, I've been here since it started..lolol... I don't come too often, but please feel free to ask away.. Love Lizzie |
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05-08-2008, 05:00 PM
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Junior Member
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My new friend Lizzie- thank you! I started another thread also and between the two I am finding such kind souls. When I woke up today and the world was blurry for awhile and my stomach was unhappy, I did not know how to get throught the day. With the help of you, others and my sweet dog Scoutie, I am here for another day.
Many gorilla hugs to you, Josie |
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