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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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04-19-2018, 11:02 AM | #1 | ||
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Senior Member
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I have had MG since 2009. I have been tested for the AChR and MuSK antibodies several times each (and also LEMS), always negative. I was diagnosed with MG the third time I had a SFEMG (the first two came back borderline).
I have also had no significant response to Imuran, IVIg, or Mestinon. My neurologist is going to test me tomorrow for the LRP4 antibody. He was surprised when I told him I had read that there's now a commercially available test, but he believed me, and found it. I have tested negative sooo many times... I will be disappointed if I get another negative test. We are trying to build a case to the insurance company to try Rituxan. But how cool would that be if it's positive! Abby |
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"Thanks for this!" says: | AnnieB3 (04-29-2018) |
04-19-2018, 10:38 PM | #2 | ||
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Here's hoping you get the results you want, and the insurance approval as well.
I am the one who posted that there was now an LRP4 test commercially available through Athena Laboratories. I am very glad that the time I have spent with that horrid big name doctor/facility, where I learned about the test, has turned out to not be a total waste, and someone is getting some benefit from it. This actually makes me happy about it. |
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"Thanks for this!" says: | AnnieB3 (04-29-2018), pingpongman (04-20-2018) |
04-23-2018, 06:15 AM | #3 | ||
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Oh, it was you! I couldn't remember. Thank you!
Abby |
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"Thanks for this!" says: | AnnieB3 (04-29-2018) |
04-26-2018, 07:30 PM | #4 | ||
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Senior Member
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By the way--I know all insurances are different, but it turns out mine will pay at in-network levels for out-of-network labs when no in-network lab does the test. The lab didn't know that, and if I hadn't thought to ask if there was "gap coverage," I wouldn't have known either. It's something to look into for other seronegatives who are being tested for the LRP4 antibody.
Abby |
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"Thanks for this!" says: | AnnieB3 (04-29-2018) |
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