Titin, CA and RyR Antibodies
 

Has anybody heard of these from their MG docs or research? I was looking for any diagnostic tools that would (might) help to predict what the degree of progression of MG might be. It just seemed to me like the folks in this forum who have (or had) thymus involvement were facing much bigger challenges that I am experiencing (I have no thymus involvement - - but am considered late onset).

This article @

http://archneur.ama-assn.org/cgi/con...ull/57/11/1596

was what I came across. For those not into the L-o-o-o-ng details, skip directly to the CONCLUSIONS section.

Has anyone been tested for these antibodies (especially interesting for those of us who are seronegative)? I know the article is 9 years old - -but it was news to me!!

Thoughts? (AnnieB - I'll bet you already know the scoop on this!!)

Thanks for any info
Sue

good article, thank you!

Sue, Well, I hate to tell you that none of the antibody tests can tell you anything about the severity of MG, although they say that having high modulating AChR antibodies can show severity of MG. That antibody, when really high in percentage (it's shown in percentage), means that someone with MG probably has a thymoma.

I better clarify that. The Modulating antibody is shown in percentage. Most labs have normal from 0 - 20%. It is shown in "percent loss" of acetylcholine at the neuromuscular junction. When the numbers get really high, they always suspect thymoma.

"They" are still working on researching the different antibodies that could be involved in MG. There are a lot of places in the neuromuscular junction for antibodies to attack. I think they've only begun to figure all this out.

The striated muscle antibody test is often what doctors will do, in addition to the AChR antibodies, to see if you might have a thymoma. It's also often higher in LEMS patients.

I think the biggest prediction of how bad MG will get is how much you push yourself or how much you do! There is no way to predict how the course of MG will go in anyone. I wish there were. Some say hormones come into play but they don't really know how yet. May be why so many people get MG either in puberty or during their 30's when hormones wane. Who knows.

I wish I did have answers for you. I think taking one day at a time works really well with MG. And all the studies and antibody tests in the world can't show you how to have fun while having a damn AI like MG. :)

Annie