Q: Tell us a little about yourself.
My name is Victoria. I was born and raised in South Dakota. My parents were in the military, so we also lived in England before the base where we were stationed closed down. We were sent to South Georgia, where I finished high school.
I have a bachelor’s degree in biology and work as an analytical chemist in R&D. I’m actually the only woman chemist at our location (although there are many women in the lab at other locations). It freaks people out when I say I work in a chemical plant, but I don’t handle anything dangerous.
Q: When did you first notice symptoms of MG?
It was December 2016. I woke up and the right side of my face was drooping. I went to work, and I started having double vision, blurry vision, and trouble speaking. My leg muscles gave out.
I live in a small town, and there are only one or two neurologists. I got a CT scan, which showed nothing wrong with my thymus, and my AChR test came back negative. The neurologist couldn’t figure out what was wrong.
I just kept going with life, and after a few years the symptoms faded.
Q: What brought you to a diagnosis?
After I got COVID in November 2024, everything came back worse – ptosis, breathing trouble, double vision.
My new primary care doctor was amazing. He looked through my notes, did some quick research, and said, “This sounds like MG.”
He got me in with a neurologist who specializes in MG, but I had to wait months. From November through March, I had no treatment and no answers.
In the meantime, I got so weak I couldn’t walk. I ended up in the ER, where they thought it was Bell’s palsy and gave me steroids. That didn’t help. A neurologist gave me one Mestinon pill, and it worked within 15 minutes! Still, I left without a prescription. My PCP wasn’t comfortable prescribing anything.
When I finally saw a specialist in March, he diagnosed me right away. He had me hold my hands up in front of me and timed me for a minute. Almost immediately, my muscles gave out. He did the ice pack test on my eye, and it immediately worked.
My blood tests came back negative for AChR and MuSK, but he conducted a EMG test (single fiber electromyography) that came back positive for MG.
All in all, it took me seven years to get my diagnosis.
Q: What’s been the biggest challenge?
Insurance, hands down. They’ve denied IVIG, pushed medications that aren’t appropriate for MG, and basically controlled my care. It’s so frustrating. I want more awareness and better understanding for seronegative patients especially.
I also feel strongly that educating doctors and nurses in the emergency room is really crucial. There is so little knowledge about MG. Soon after my diagnosis, I had an exacerbation. I could not breathe all night. I went to the ER, where they said nothing was wrong because my oxygen stat was 99%. I had to educate them.
MG has also affected my work. This spring I made the difficult decision to go on FMLA leave for about six weeks. I don’t have a sit-down job – it’s hands-on lab work. Coming back after my leave has not been particularly easy.
Q: What keeps you going?
My husband and my family have been wonderful. He literally helps push me up the stairs when I can’t make it myself. I’ve been sharing my journey online and connecting with others as I want to help support others who are going through this. I’ve always had compassion for people who have chronic illnesses, but you can’t understand what it’s like until you’re in their shoes.