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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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04-12-2017, 11:00 PM | #1 | ||
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Junior Member
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13 months after my thymectomy, all Achr antibodies (binding, blocking, modulating) have increase about 50%, while symptoms have improved significantly (about 95% improvement).
Has anyone heard of this happening and/or know anything about this phenomena? Thanks |
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"Thanks for this!" says: | ErinBear (04-14-2017) |
04-13-2017, 05:47 AM | #2 | ||
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Junior Member
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Jeff,
In the first year after my thymectomy, my antibody levels also went up. Three years later the binding achr was at 1260! Most of My symptoms went away the first month after my surgery and 5+ years later I'm still mostly symptom free. It is my understanding that the positive antibody levels in no way correlates to the severity of the disease,( no matter how much I worry about the high levels!). Lisa |
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04-13-2017, 08:03 AM | #3 | ||
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Junior Member
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Good to know, thanks.
Do you know why this happens? |
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04-13-2017, 09:25 AM | #4 | ||
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Grand Magnate
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Hi, Jeff. There are a few studies in regards to this phenomenon. You can go to PubMed and do a search on the topic.
[Thymectomy and antibodies to acetylcholine receptors (AChR) in patients with myasthenia gravis in the early postoperative period]. - PubMed - NCBI This one only refers to the "early postoperative period" and not what may happen a year or more later, as what happened with Lisa. There is the possibility that the antibodies are always in the body. But when the thymus is removed, the antibodies are now "circulating antibodies" and not "tissue bound" ones. In other words, they are there but not attacking the NMJ anymore. I haven't run into any research that has been able to elucidate this process to any degree of certainty. More studies are being done recently, so stay tuned! Lisa is right in that the number of antibodies do not necessarily relate to the severity of MG. Trust how you are feeling. If you become weak, just call your neuro! I'm glad that you (both) had such success! Annie |
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"Thanks for this!" says: | ErinBear (04-14-2017) |
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