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
Quote:
Originally Posted by 4-eyes
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? |