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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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05-09-2012, 07:41 PM | #1 | |||
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What is the most Positive Antibodies you have ever heard of being positive at one time? I went to see a specialist today and my bloodwork from March came back with 4 positives. He said it was the most complex case he had seen. My wife is sorting through all this as I type. Will post the different positive results in the morning.
Mike |
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05-10-2012, 11:24 PM | #2 | ||
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Grand Magnate
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Mike, What do you mean by 4 antibodies? There's only the binding and modulating. They can do the blocking but they're not done much anymore (due to Mayo saying they aren't necessary). Did they run the tests 4 times?
Remember, antibody levels do NOT necessarily reflect clinical severity. They need to go on the clinical exam, how easily you fatigue after activities, etc. Have you had breathing tests lately to see how that's going? So, how are YOU doing? Annie |
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05-11-2012, 05:16 AM | #3 | |||
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My wife is still sorting through the results but it was binding, modulating, channel and skeltal. I finished my 24 IVIG treatments and by the day of the 24th I was ready to order a wheelchair. Woke up on the day of the 24th and my legs had returned to normal it was just unbelievable. We are not sure if it was because of reduction of Pred or Cellcept kicking in. My neuro-muscular Dr felt it was reduction of Pred. He said the Pred was causing a severe effect on my leg muscles. So to say how I'm doing, great right now just hoping this lasts a bit.
Thanks Mike |
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05-11-2012, 07:00 AM | #4 | ||
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Senior Member
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Mike, I'm so glad to hear you finally have an improvement!
Abby |
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05-11-2012, 07:05 AM | #5 | |||
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My legs were really bad. I could only lift my left foot 6 inches with max effort. Thought it was wheelchair time then OVERNIGHT the strength returned. We are now sure IVIG is a waste of time on me. Not sure what is next. Thanks for your thoughts.
Mike |
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05-15-2012, 12:16 AM | #6 | ||
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Grand Magnate
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Mike, Which channel antibodies were positive? Good grief!
Please refresh my memory, did you have a thymectomy? How high were the skeletal antibodies? If they are high, they may have to recheck your thymus for a tumor! With so many antibodies, I'm really surprised that they didn't check blocking. They can still do that test. So you might indeed have BOTH MG and CMS. You really should head to Mayo for more specialized testing! Can you do that? It's quite a difficult thing to do when you aren't doing so hot. The only reason is that there might be treatments your docs aren't considering, like 3,4 DAP. I'll bet you really threw them for a loop. I'm sorry you are dealing with all of this. Annie Given that some studies implicate a virus in the genesis of MG, have your docs thought about checking some other basic testing? |
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