When I graduated eighth grade, I thought the greatest change of my life would be transitioning into high school. Little did I know what was to come.
Hello! My name is Eliza, and I am a high school senior in Kentucky. I am currently 17 years old and have been dealing with MOG-AD since the start of my freshman year in 2022. After reading many submissions on the MOG Blog, I feel inspired to share my story as well!
I first noticed symptoms right after a grueling field hockey tournament in Virginia. I was getting horrible migraines, so bad that they prevented me from doing much at all. My parents and I could sense that something was wrong, so we got in the car and drove to the hospital. After many hours of waiting and wondering and pacing, the hospital made the decision to move me to a different, bigger hospital. That was when things really started to ramp up.
My days in that hospital were spent being misdiagnosed and treated for something I did not have.
My mom begged the doctors for an MRI, for another test, for anything. But, thinking that my medical mystery was solved, the doctors did nothing. All the while, paralysis was creeping up my legs. My stay at this hospital was mentally exhausting. No one was listening. To make matters worse, COVID-19 policies were still in effect, meaning I could have little to no visitors. I was isolated from my friends, who were enjoying the start of high school. And what about the thing I loved most? Field hockey was gone, too. I felt completely alone.
Thankfully, because of my mom’s advocacy and tenacious fight for my behalf, they finally gave me an MRI. They found multiple lesions on my brain and spine, and with that I was diagnosed with transverse myelitis (test results later confirmed a diagnosis of MOG-AD). I was moved again to a hospital better suited for my case and everything changed. I received the correct treatment of plasmapheresis and IV steroids and slowly, my paralysis receded. Physical therapy followed, and after I learned how to walk again, I was finally released from the hospital!
My story unfortunately does not end there.
A couple of weeks after I was released, I noticed the color started to drain from my world. It was like someone had turned the world on grayscale and my vision was fuzzy. We went back to the hospital and I was diagnosed with optic neuritis. I was so upset that I was back in the hospital that I do not remember much about the visit. It’s a blur of pupillary light reflex tests, color vision tests, and ophthalmoscopies. I was put back on IV steroids and received IVIG treatment, and luckily my vision improved. After being released this time, I continued oral steroids for several weeks. The side effects were terrible, but at least I had some relief from the MOG-AD symptoms.
Then came prevention measures. To protect me from another relapse, my neurologist prescribed IVIG therapy. I received two infusions a month for two years, which led me to miss almost a month of school a year due to the infusions themselves and the migraines that came after. Balancing infusions, migraines, and mountains of missed assignments was brutal. But through it all, my teachers showed me grace and were so supportive. For that, I will be eternally grateful.
Now, a little over three years later, I am done with IVIG and remain symptom free. I am enjoying field hockey and my senior year normally and am armed with the information I need to receive responsive treatment should I experience a relapse. While extremely unfortunate and unpleasant, I have grown so much from my experience. I will never take for granted the amazing functions our bodies bless us with; the ability to walk, to see, and to experience the world. I have more appreciation for my community and how we can lean on each other in times of need. And finally, I am grateful for the dedicated research that continues to advance healthcare.
Thanks for reading, and I hope that my story gives y’all hope. Know that when in a long, difficult tunnel, there is light at the end!
By Eliza Martin
