Jennifer Crow, an MG patient advocate, shares how she saw multiple neurologists before receiving a diagnosis of seronegative MG and why she continued searching for answers after feeling dismissed and misunderstood.
Transcript
To get my diagnosis, I actually had to see half a dozen neurologists. I’m seronegative myasthenia gravis, which means my antibodies didn’t show up.
And so the very first few neurologists I went to, they didn’t believe that I was sick.
They labeled me with conversion disorder, which is a thing, but I didn’t believe that was my thing because they diagnosed that without any further tests. They wouldn’t do a nerve conduction study test, and they refused to do the SFEMG.
And so I was getting these diagnoses without the testing to confirm or deny what it could be. And so I had to look outside my local radius to find specialists who deal with seronegative patients.
And so that was the moment that like a diagnosis of conversion disorder and saying, “This explains what’s happening to you.” That’s not good enough.
So that started my entire journey. I refused to accept that. I thought something was neurologically wrong with me. So I kept searching until I found somebody willing to help.
