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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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10-10-2012, 11:00 AM | #1 | ||
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Junior Member
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Hello,
we have an 11 year old son. In 2008 he was tested for several things. He was diagnosed with hoshimotos thyroiditis. He has has a consistent high t4, tested positive for anti-tpo (level <1000), thyroglobulin antibodies (<1193), + ana, ana titer 1:160, + for immunoglobin a, positive for ach binding and modulating, positive for gad antibodies. He has no clinical signs or symptoms of myasthenia gravis, he sees a neurologist regularly as well as an endocronologist and will see a pediatric rhuematologist next week. Ophthamologist said he does not see signs of mg. I have doctors that wonder why there are so many antibodies and what they can and will do and doctors who say they are just there and don't mean anything. |
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10-10-2012, 11:38 AM | #2 | ||
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Junior Member
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Quote:
I should also add that 12 years ago my exhusband, our sons father, was diagnosed with non treatment responsive hoshimotos encephalitis and still suffers from the disease. He also had anti- TPO and TG antibodies both showing <5000, positive GAD and ANA ab and titers. |
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10-10-2012, 12:52 PM | #3 | ||
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Grand Magnate
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I'm sorry your son is going through so much. Have you considered seeing an immunologist? There are some people who have Autoimmune Polyglandular Syndrome. An immunologist would be able to thoroughly evaluate what could be causing so many positive antibody levels.
Some people who have a thymoma, a tumor of the thymus, can have high MG antibodies. No, I'm not saying your son has a tumor!! That's just one possibility. After the tumor is removed, then antibodies can disappear. There are many things that could be going on here. I know that it's frustrating to go through so much doctoring. I hope your son is doing okay with it. But it's really important to figure out the root cause(s). I don't know that any of us can adequately answer questions to such a complex situation. Only doctors can. I really hope your son - and his father - can get good care. You as well, since you're going through so much too! Annie |
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10-10-2012, 02:07 PM | #4 | ||
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Junior Member
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Thank you. He has seen an immunologist and a genetics specialist, but they didn't have any answers either. He had an MRI in 2008 and his brain and thymus were normal. Our last hope is the pediatric rhuematologist next week. He handles it ok, as good as an 11 year old can.
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