Many of us have been tested for this. Mine was negative twice now this year.
Are you posative for MUSK?

Jeannie

I think at least most of us have been tested for it, some more than once due to bulbar symptoms. One of our members is positive for both and has not been doing well at all and hasn't posted in some time. Thank you for bringing this up. We have many new people on site and many doctors still do not recognize MG without AChR + blood testing. I know you had the robotic surgery, but don't remember what your antibody testing staus was. How are you doing?

b.

I am doing well, with the help of Rituxab. I am in a clinical trial with 8 other patients at Yale Medical Center. I have been on 60mg of Predisione and I am now on 5mg and slowly decreasing...it has been a brutal 4 1/2 years...with difficulty in the beginning trying to figure out why the meds were not working.....MuSK was the key factor understanding my MG....

Hi Sandra!
It is so nice to see you here again!

I don't think everyone has had the problem I had with the test for MuSK but I wanted to add that Athena Diagnostics does this test.

My insurance company is still fighting paying for it over a year later (I am letting them all work it out still). Make sure your Doctors know that the lab will be sending the blood there for testing and that they get the okay from the Insurance company first. Mine was a 1,500.00 bill. I don't think most insurance companies fight it, but mine is.
Love, Becca

Hi Becca, FYI..Quest bought Athena Diagnostics not quite a year ago..should be much easier to have it paid now!!!

Oh that is good news!
We don't need that silliness during all the testing do we?

Sandra, I am always so happy to hear your progress and that you are feeling better! You will always be a hero to me!
Love ya, Becca