Positive Test Results Only Once
I started having MG symptoms in 2021. However, all my test results were negative for an entire year. Then, in 2022, I tested strongly positive for MuSK. Now, in 2023, my test results are negative again, but I still have symptoms. Its strange because I had 2 crises this year with negative test results. Does anyone else have anything similar? My neurologist thinks I still have MusK instead of being double seronegative. I just find it so strange and because of this, it has been very difficult for me to get my medicine approved by insurance
This is an old post but it still deserves an answer because others may be interested. If you test positive for AChR Binding antibodies or MuSk antibodies, you have MG. Period. Full stop. There is no reason these mutant antibodies should ever be present in substantial amounts in a healthy body. Further testing is unnecessary and often counterproductive. The test results can vary widely from one month to the next for no known reason, and repeated antibody tests are not usually done to track the progress of the disease. Your symptoms and crises are evidence enough and discontinuing treatment due to a subsequent test result is a really bad idea. Your neurologist is almost certainly correct. MuSK is hard enough to treat without a lot of unnecessary indecision.
I'm new to all this... Did you ever find an answer to your question?
