It walks like MG, talks like MG, sounds like MG, but your blood work revealed that the specific antibodies associated with MG were not present. Where does that leave you? For some people, an MG diagnosis is still given, however; the disease is classified as seronegative.
For those of you that aren’t as familiar with this diagnosis, seronegative myasthenia gravis is a form of MG that shows indications of the disease yet the anti-AChR and Anti-MuSK autoantibodies were not detected in your bloodwork. On some occasions, anti-LRP4 antibodies are present for those who are double-seronegative, suggesting that there are potentially other antibodies associated with myasthenia gravis. Additionally, the diagnostic process of seronegative MG can include a patient’s response to MG treatments as well as other specialized diagnostic tests.
In 2017, Raremark conducted a survey on seronegative MG patients. Part of the survey required patients to state their most challenging aspect of receiving this diagnosis. One patient revealed, “I worry that being seronegative (and having only ‘slightly abnormal’ SFEMG) means that the diagnosis of MG is questionable.”
When I was diagnosed with MG, it took years to receive an accurate diagnosis. Multiple providers either didn’t believe me or couldn’t determine what was wrong with me. With a simple blood test, they were able to confirm that I had the anti-AChR antibodies. For me, that was like “the proof is in the pudding.” This blood test validated everything I was feeling physically. But what about the people that clearly express MG symptoms but don’t have the blood test to prove it? With a disease that is already overlooked by so many healthcare professionals, I can only imagine how disheartening it must be to have a blood test come back with no answers.
At our monthly virtual meet-up next Monday, Dr. Ghazala Hayat of St. Louis University will be giving a talk about seronegative MG. If you have a seronegative MG diagnosis or are simply interested in learning more about this topic, we encourage you to join the presentation! At the MGA, we recognize how important it is to shed light on this particular type of MG and want those who have this diagnosis to know that we recognize them, hear them, and are here to support them. To attend this virtual event, please RSVP to tanyarenner@mgakc.org by 12 pm on Monday, July 20th to receive the Zoom login credentials.
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This blog post was written by Meridith O'Connor, St. Louis Program Coordinator of the Myasthenia Gravis Association.