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NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)
-   -   (very unscientific) poll (https://www.neurotalk.org/myasthenia-gravis/197088-unscientific-poll.html)

anon6618 11-14-2013 01:38 PM
Double positive here :Dancing-Chilli: so 2 + 3 for me.

mg580 11-15-2013 12:50 PM
2. are diagnosed by a blood test that revealed AchR antibodies

Stellatum 11-16-2013 09:47 AM
Tallies:
--7 double-seronegatives
--2 AchR
--1 MuSK
--1 AchR and MuSK

I think this is conclusive evidence that one of the symptoms of double-seronegative MG is the tendency to answer polls. :)

Abby

Heat Intolerant 11-16-2013 05:38 PM
That statement is amusing probably at least in part because it is the wrong conclusion -- although I'm sure you could get a bunch of neurologists who have no interest in statistics (maybe not science either) to come to the same conclusion.

This disease is not so easily treatable that all these quickly diagnosed people with antibodies won't post.

I would say it's evidence that the current blood tests or the way they do the blood testing is not sensitive enough.

matsonme 12-03-2013 12:47 AM
Quote:
Originally Posted by Stellatum (Post 1028933)
Once I tried to use the poll feature of the forum, and didn't get much of a response, so if it's OK, I'd like to do this more informally. Please respond below and tell us whether you

1. are undiagnosed but suspect you have MG
2. are diagnosed by a blood test that revealed AchR antibodies
3. are diagnosed by a blood test that revealed MuSK antibodies
4. have tested negative for both AchR and MuSK, but got a diagnosis of MG through some other means (tensilon, SFEMG, etc.)
5. have some other myasthenic disease (LEMS, CMS)

The reason I ask is that it seems to me that there are way more double-seronegatives (#4 above) here than the stats can account for. On a MG Facebook page, someone asked the question, and the tally so far is 8 AchR; 1 MuSK; and 11 double seronegatives.

Abby
I am diagnosed by a blood test that revealed AchR antibodies. I was told I have ocular MG (just a week ago, after 3 months of symptoms).

FREDH 12-09-2013 06:27 PM
test
 
Quote:
Originally Posted by Stellatum (Post 1028933)
Once I tried to use the poll feature of the forum, and didn't get much of a response, so if it's OK, I'd like to do this more informally. Please respond below and tell us whether you

1. are undiagnosed but suspect you have MG
2. are diagnosed by a blood test that revealed AchR antibodies
3. are diagnosed by a blood test that revealed MuSK antibodies
4. have tested negative for both AchR and MuSK, but got a diagnosis of MG through some other means (tensilon, SFEMG, etc.)
5. have some other myasthenic disease (LEMS, CMS)

The reason I ask is that it seems to me that there are way more double-seronegatives (#4 above) here than the stats can account for. On a MG Facebook page, someone asked the question, and the tally so far is 8 AchR; 1 MuSK; and 11 double seronegatives.

Abby
I was diagnosed by blood test---AchR positive
FREDH


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