The MonSter in Me
At a very young age, probably five to seven years old, I was in pain and had spasms. I was so young that I called it an itch. It was probably a painful nerve itch. The doctors told my mom it was juvenile arthritis. By age 10, I took a fall and had even more issues with spasms and other neurological issues. That seemed to be what I know now as my first relapse.
My symptoms kept progressing
The depression and anxiety started to set in, as well as migraines that kept me out of school. Restless leg syndrome, memory and attention issues, you name it. And my doctor told me it was fibromyalgia because my mom has that. I also presented as a masculine-presenting lesbian, which presented more discrimination from healthcare providers. I then transitioned to male. I am a trans male and that started a whole slew of more discrimination. At age twenty-four, I suddenly started having color changes in my eyes. Then double vision and I ended up in the emergency room. They told me it was a migraine and barely listened to what I was telling them. Now my speech was slurring and had tremors all over my body.
The power of a doctor listening and validating you
I followed up with a neurologist. He happened to be the first doctor of color I had ever been to. I'm black, Puerto Rican, and Native American. This doctor was Dominican and actually listened to me!!! He said it was either a stroke or multiple sclerosis. Those were my two choices and I prayed it was a stroke, after reading up on multiple sclerosis. I didn't want it to be MS. However, after three MRIs, they found twenty-four lesions on my brain and several on my cervical and thoracic spine. It was indeed MS and clearly had progressed for years. The problem is, doctors thought black people didn't get MS. Boy, are they wrong. My mom's neurologist actually told her that.
It was time to see an MS specialist
I ended up having to leave the nice neurologist because my MS was so progressive that I needed an MS specialist. I started on Tecfidera, which did nothing. I had another major relapse and marked progression on my MRIs. Had to take Tysabri for five years, until I developed the dreaded JC virus. I just started Ocrevus, and I'm hoping it's better than the past meds. I had symptom progression on Tysabri, even though my MRIs stayed stable.
How I feel about everything now
This disease has taken almost everything from me, and just like Christina Applegate, I'm mad. I'm not going to pretend to be OK or happy with it. But I defy the odds every day, even with the many meds I take for it, Ampyra has kept me upright and walking, and there are studies suggesting it helps with cognitive function. I hope it starts to help with that.
I continue to advocate for medical racism, LGBTQ discrimination, and gender identity discrimination. I don't want anyone else to go through what I went through.
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