Over the next six months, I saw dozens of doctors and had countless hospital admissions and tests done: multiple spinal taps, countless MRIs and blood draws, plus visits with neurologists, neuro-oncologists, and infectious disease doctors. I was poked, prodded, and talked about like I wasn’t lying in bed in front of the doctors.
All anyone could tell me or my parents was that I had a demyelination disease (a term encompassing conditions where there’s damage to the nerve coating). It’s similar to when the rubber coating on your phone charger starts to break down. Eventually, your phone needs to be in the perfect position for it to charge. That’s what was happening in my spine.
During a flare, each lesion compromised my spine’s myelin sheath or protective coating. Each part of your spine is responsible for a different function of your body, and my flares affected the mobility of my extremities and vision.
But since my symptoms were a bit of a mixed bag, doctors could not be certain of exactly what I had. I didn’t neatly fit into a diagnosis box. The other disease often discussed was Neuromyelitis Optica (NMO), or the angry cousin of MS.
Running out of options, my doctors started me on a form of immunotherapy that could be used for both MS and NMO. It’s a powerful drug traditionally used for non-Hodgkin’s lymphoma and lupus. They basically threw me a hail Mary. The first time I received treatment, I had an allergic reaction where my throat closed, and I broke out in hives for eight hours. But ultimately, it was the best option I had at the time.
The doctor’s appointments and tests continued. From the first ER visit to the first hospitalization to getting a diagnosis, the whole process was unbelievably terrifying. I lost and had to regain a lot of my faculties. I had to do occupational therapy to relearn how to use zippers, hold a toothbrush, and walk with limited sensation on my left side. I had no idea what was happening to me or what my quality of life would be going forward.
By February, seven months after my first flare, I got a formal diagnosis. I had primary progressive Multiple Sclerosis. There is no cure, only “disease management.”