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Old 02-04-2013, 04:01 PM
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
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Alice, I had an odd situation back in 2002 - to say the least. Anyway, the lab drew blood for the AChR test and the MuSK test. They never ran the MuSK test. I didn't find out why not until nearly 7 years later. They had sent the one tube to one lab for the AChR test. Because of the "indication" of activity (not outright positive), they sent the other tube onto another lab for a 2nd AChR test. Well, that one was positive. No, I was never told about it. It's a long story, which I've talked about before.

What that showed me is that all labs aren't created equally. Mayo "invented" their test and even though it's not "FDA approved," it has stood up as the better place to send serum for MG antibody testing.

What's ironic about the slide show is that I've personally seen the opposite in clinical practice there. So I guess I also found it funny.

I think there are patients with ACh and MuSK antibodies who are never diagnosed. And doctors are very uncomfortable diagnosing seronegative MG. It's as if they don't trust the clinical evidence. And while this is only a slide show algorithm, it is the first one I've seen from a major institution that shows actual guidelines. That sounded ludicrous even as I wrote it. It's very sad that MG is so unnecessarily difficult to diagnose.

Celeste, I don't think they can conclude that, given what I've read. But this is an "algorithm" and there are exceptions to any rule! I'd love to know if anyone was an exception to it. Not to prove Mayo wrong or anything but to know what the whole truth is. If a blood test can "prove" you don't have a thymoma, then why radiate a patient with a CT scan?

Annie
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"Thanks for this!" says:
southblues (02-04-2013)