(very unscientific) poll
 

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'm seronegative, diagnosed by SFEMG resulting from abnormal repetitive muscle stim test.

I'm a MuSK-y! ;)

I think the reason that there seems to be so many sero-negs on message boards is because the folks are not diagnosed, and don't feel well, so they tend to look for answers more. Most of us who frequent this site regularly are those who were more difficult to diagnose or who have had a tougher journey in general with MG. There are those (believe it or not) who get sick, diagnosed, treated and move on with their lives with relatively little disruption. I once asked my neuro how many she would consider did that, and she said at least 50%.

Lucky us, huh?

I think it's definitely true that the undiagnosed are more likely to hang out here. But even if we don't count the undiagnosed seronegatives, the percentage of seronegatives here and on FB still seems way higher than the statistics would indicate it should be. Do you think it's possible that the reason is that seronegatives don't respond as well to treatment?

In other words, if you call the pool of people here "people for whom MG is a big issue," and there's a higher percentage of seronegs in this pool than in the general pool of MGers--that implies that seronegs are more likely to have MG that's a big issue in their lives.

Again, though, I know enough to realize that any stats we gather here are almost meaningless. It's all anecdotal. Still, the anecdotal evidence raises interesting questions.

Abby

I am double sero-negative. I was diagnosed by Tension test in the ER. My rep stem and emg have been negative. My Neuro does not do Sfemg but says it is not needed to confirm diagnosis.
I have also been reading that it is thought some of the seronegs may eventually show Achr antibodies. It may be that the test isn't specific enough to detect low levels of antibodies.
It is frustrating to deal with this disease, any information about dealing with it is welcome. Thanks for gathering this info
Sandy:)

(very unscientific) poll
 

I am also a double Sero negative. I suffered for five (5) months. I lost over 50 pounts and went to 3 different neurologist. The last neurologist was at Johns Hopkins in Baltimore. After being put through a battery of test; I was finally diagnosed with MG. I have been on Prednisone and Imuran for about four months and everything is back to normal. My blood is being monitored every three weeks.

I am AChr and MUSK negative. Also negative on SFEMG and RNS. Tensilon test was positive and I had a positive response to mestinon and prednisone. It was a long road to diagnosis, but glad I finally got it. The 7 years of limbo (and no treatment) was hard.
Cate

I'm undiagnosed.. but get IVIG for myasthenic symptoms .. I crashed and ended up inpatient, the labs have been negative, and the repetitive stim was slightly abnormal, but not enough abnormal for diagnosis- however it was performed 10 days after IVIG.. so who knows.. they run the MG/LEMs labs about twice yearly.. all wondering if they will turn positive at some point.. I am Musk negative as well. I haven't had a SFEMG... Thankfully the IVIG keeps me alive for now! :)

I am double seronegative, diagnosed with MG by SFEMG

kathie

I´m AchR positive.
Maurice.