Dottie: I just wanted to say one more thing. Be very careful about the Mayo. I wasted thousands, and I mean thousands, of dollars going there and ended up with a neurologist who (I felt) wasn't very knowledgeable about mg. And I asked and asked for a sf emg and didn't get one, based on his opinion that it wasn't the best test for mg. That said, they are supposed to have a great mg lab. Please, if you do go, just be careful that you get a neuro who specializes in mg. Don't settle for anything less and assume you'll be sent to the right place. And don't assume that because they're the Mayo they'll want to dig and dig for an answer. They're no more interested in that (in my experience) than any other doctor.

Just my two cents.

Ally

Ally, you're not the first person I've heard have wasted time, money and hopes with the Mayo. Amazes me since they have such a world wide reputation to live up to. Maybe they've just gotten too big for all our own good! I'm sorry you're still looking for the elusive dx also. Some of them question you if the antibodies are all you're missing, some if you have the antibodies without the "right" EMG! Some of us just can't win! Hope you both get some answers that stick soon!

Actually i was going to go to th eMayo here but i'm glad i didn't, plus my insurance would of been out of network.

Hi Dottie and Ally,

I sure you hope you get some answers soon. I can only imagine how frustrated you both must be. Hang in there, we're all pulling for you!

Take care,
Pat

I had a MusK lab drawn on the 7th of May....and the results are still pending...this lab was sent to mayo...how long does it take??

Stephanie , I think that one takes awhile to get back, I can't really remember, maybe two weeks? I know way to long to wait ! I hope you get some good news !
Mary

My MG/MuSK antibody test took 4 weeks to get back! 4 weeks! No idea why! I was negative for the MuSK, but my antibody count was 600 - waaaaay high!

I hope you are doing well today!

Big hugs!
ERin

Have I messed up my Musk test results?
Prior to having blood drawn for the test, I called the lab & asked if I should go off mestinon since I was concerned continued usage might create a false negative. They told me to continue taking it, that there was no need to go off any medication including mestinon.

I'm due to get the results in four days or so and am wondering if I was right to listen to them (given the amount of swirling misinformation about MG I've already encountered).

Have I messed up my Musk test results?

Though there is this.

http://www.ncbi.nlm.nih.gov/pubmed/2540433

It's a very small study but I've seen a couple of others that say Mestinon suppresses the humoral immune system (that makes antibodies).

Seishin, Take a deep breath! It'll be okay.


Annie

Ah well... (sigh)....
I'll balance the scales in my hope that mestinon continuation didn't affect test results and my concern that I just blew $200 plus change. The gasket will remain in check for now.