At the 2026 MGFA National Patient Conference, patient advocate Melissa Wohlust shares her experience navigating the years without a diagnosis and the importance of advocating for expert care in myasthenia gravis.
Transcript
I went through 11 years being undiagnosed because I was seeing doctors that either didn’t know what was wrong with me, they weren’t familiar with MG at all, or they told me I looked too healthy to have myasthenia gravis.
So at my worst, when I was really unable to walk and I was very limited in what I could do, someone in my family contacted the MGFA [Myasthenia Gravis Foundation of America], and it was actually the MGFA that guided me to the proper care, getting me to an expert in myasthenia gravis.
I did have to travel at that time, about an hour to get to a neurologist that was able to diagnose me, and then that neurologist retired, and I needed to travel about four hours across the state to get to another expert neurologist in MG, especially seronegative MG.
So my suggestion for those trying to get diagnosed, having all of the symptoms, other doctors perhaps supporting that there may be a possibility of having MG, is to make sure that you get to an expert neurologist in MG.
And on the MGFA website they do have information regarding neurologists, so don’t be afraid to travel.
Advocate for yourself. Make sure you get that diagnosis. And if somebody says, “It’s not MG,” then what is it? What is the cause of all of these symptoms?
It can be really exhausting to find the strength, especially when you’re not feeling well. I’m going to get emotional.
Especially when you’re not feeling well, to get the strength to pursue a diagnosis. But it’s so very important because the diagnosis will lead you to treatment and to a much better life.
