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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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Tracy, I am so sorry you are getting the run around. I hope you continue to pursue the thymectomy. I am pushing the topic with my neuro in the next visit in 3 weeks.
I have read so many studies that it is the best chance of remission (30%) and that nearly everyone shows improvement. I am a single parent of a teenage daughter and feel I have to try for her sake. I will let you know how it goes. kathie |
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#2 | |||
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Does thymectomy help people that are seronegative and do not show any abnormality of the thymus?
__________________
Celeste |
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#3 | ||
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"Thanks for this!" says: | southblues (06-23-2013) |
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#4 | |||
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I read an article in the 11th annual myasthenia gravis and related disorder conference where they tested seonegative MGer by adding more rapsyn ( the substance that makes ACHR receptors cluster) and they found if they added rapsyn to the test, 60% of SNMG tested positive for ACHR antibodies. They theorized that these MGers had low affinity binding and the test was not sensitive enough. (reference below). They felt SNMGers fit the profile of ACHR positive MGers. Theoretically, this would make thymectomy beneficial to the SNMGer. I can get to the book below because it is in the University where I work. I have not found a free link to it.
book:June 2008 Volume 1132 Myasthenia Gravis and Related Disorders 11th International Conference article: Myasthenia Gravis Seronegative for Acetylcholine Receptor Antibodies Angela Vincent, Maria Isabel Leite, Maria Elena Farrugia, Saiju Jacob, Stuart Viegas, Hiro Shiraishi, Olivier Benveniste, B. Paul Morgan, David Hilton-Jones, John Newsom-Davis*, David Beeson, Nick Willcox Article first published online: 28 JUN 2008, pg 84-92 |
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"Thanks for this!" says: |
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#5 | ||
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Junior Member
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I have read that it does, that some people have abnormalities that show up after the thymus is removed and biopsied, and during MRI it looked "normal". My neuro says seronegative means nothing, the symptoms are what counts.
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"Thanks for this!" says: | cait24 (07-12-2013), southblues (07-13-2013) |
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