Mike, I didn't bring up Mayo because they're somehow better than other medical centers! I actually have an opposite opinion, having been "cared for" by them.
However, they are one of two places in the country that can do the specific CMS blood tests or other testing. The other places cannot do that! Well, they can send off blood to be tested but that's not the same as having CMS experts to talk to.
So do they think you have LEMS?
Does Athena list the results as a %? 640 is pretty high on any scale!
If you do have some kind of paraneoplastic situation, immunosuppression would not be good! I know, you don't want MG to kill you either.
Having both MG and LEMS antibodies presents a complex medical conundrum. I can almost see institutions fighting over having you as a guinea pig.
I'm making fun but this is pretty serious. And have they thought about testing your sister for the LEMS antibodies?
Things in the body change. Your thymus may have been fine 2 years ago but it may not be now or there may be some other area of your body that the channel P/Q is reflecting. You know how cancer stalks all of us as we age, especially after immunosuppression. I just hope your docs will not underestimate all of the studies that show the cancer risk for LEMS patients and those with a high striational muscle antibody test.
You know I wish nothing but the best for you. It's usually the things doctors "assume" are okay that end up hurting us. It sounds like your doctor was amazing and ordering all of those tests was super smart' as is your wife.
I hope someone gets to the bottom of this for you. You deserve to know what the heck is going on!