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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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12-21-2012, 05:52 PM | #61 | |||
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My first bloodwork was negative and had ocular only. Progressed to positive for 4 antibodies and generalized MG. Doesn't mean you will go that route each of our cases are different.
Mike |
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12-21-2012, 06:12 PM | #62 | |||
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I am also sero-negative. My neurologist is convinced that I do have MG, and the mestinon sure does make a difference.
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Celeste |
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12-21-2012, 11:38 PM | #63 | |||
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From what I understand, you can be sero-negative and still have. @Memmsw: are you on the white pill Mestinon, or the time released version? If its the white pill, they only last so long, and yeah, you'd be drooping again pretty soon. The time release works much better (and of course, more expensive).
If I don't get back to y'all before then, a very Merry Christmas to you all! |
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12-21-2012, 11:46 PM | #64 | ||
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Quote:
Thank you all for sharing your experiences with me. Happy Holidays and all my best wishes for a happy, healthy New Year. |
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12-28-2012, 09:41 AM | #65 | ||
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I am also sero-negative. My neurologist has to convince that I have MG each time I go in to see her. She diagnosed me by history and physical exam. The Mestinon definately helps me which she indicates is further "proof" of my diagnosis.
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07-17-2013, 05:20 PM | #66 | ||
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Hi Mike,
Just been reading your thread. I am absolutely desperate for help my daughter who is 14 has progressively become very unwell over the past 18 months. She is now needing to use a wheel chair is tube fed and has permanent blurry vision. She feels nausea 24/7. We sent bloods to Mayo to discover that she was positive to striational muscle antibodies. The doctrs here now have those results but dont know what to do with them or what they actually mean. She had a mri and thymus was clear. They are treating my daughter like her symptoms are in her head. I am so distressed and i am willing to travel anywhere in the world to see anyone. Just wondering if these symptoms plus alot more symptoms of more personal nature are what you are experiencing. I have never been on a forum before and will give you my email so you can write directly to me. dsouthengmail.com I would really appreciate to talk to you as i cant find anyone else in this same situation. Hoping you are well and that your treatment is continuing to give you some relief. Regards Danielle Quote:
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07-17-2013, 07:23 PM | #67 | |||
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I hope that your daughter gets better. It is amazing to me to think that doctor's think that antibodies can be caused by our brains because we are crazy when all the text books say that lymphocytes make them. Maybe they missed class that day.
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"Thanks for this!" says: | Fortunatos (07-17-2013) |
07-17-2013, 08:42 PM | #68 | |||
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Danielle, Sorry your daughter is experiencing such trouble. What other antibody tests did they do? Were any of the other antibody tests positive? Did they do an SFEMG? Did they put her on mestinon, pregnisone or any immunosuppressant? What kind of scan of the thymus did they do - an MRI? Sorry for so many questions, but which Mayo clinic did you go to?
Here are a couple of links, one from Mayo, that striational antibodies indicate Myasthenia Gravis. So I am confused why they would not treat her for that. http://www.hindawi.com/journals/ad/2011/740583/. http://www.mayomedicallaboratories.c...vis/7b-16.html. This form is a very supportive group for anyone going through the diagnosis and treatment of MG. kathie |
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07-17-2013, 10:36 PM | #69 | ||
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07-17-2013, 10:47 PM | #70 | ||
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Danielle, There isn't a parent on this site who doesn't understand that. The USA has lots of excellent MG doctors! If your dear daughter hasn't seen a Paediatric Neurologist as yet, I would highly recommend one.
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