Over the next six months, I saw dozens of doctors and underwent countless hospitalizations and tests: multiple spinal taps, countless MRIs and blood draws, visits to neurologists, neuro-oncologists, and Infectious disease doctor. I was poked, prodded, and talked to as if I wasn’t lying on a bed in front of a doctor.
Can anyone tell me or my parents that I have a demyelinating disease (This term covers conditions in which the nerve coating is damaged). This is similar to the rubber coating on your phone charger starting to break down. Ultimately, your phone needs to be in the perfect position to charge. It’s in my spine.
During an attack, each lesion damaged the myelin, or protective covering of my spine. Each part of the spine is responsible for a different function in the body, and my seizures affected my mobility in my limbs and my vision.
But because my symptoms were a bit complicated, doctors couldn’t pinpoint what exactly I had. I didn’t quite fit into the diagnostic framework.Another disease that people often discuss neuromyelitis optica (NMO), or the angry cousin of MS.
With no options, my doctor started me on an immunotherapy treatment that works for both MS and NMO. This is a powerful drug traditionally used to treat non-Hodgkin’s lymphoma and lupus. They basically gave me cheers, Mary. After my first treatment, I had an allergic reaction in my throat and hives that lasted for eight hours. But in the end, it was the best choice I could make at the time.
Doctor’s appointments and check-ups continue. From that first ER to the first hospitalization to getting the diagnosis, the whole process was incredibly scary. I lost a lot of my abilities and had to regain them. I had to do occupational therapy to relearn how to use a zipper, hold a toothbrush, and have limited feeling on my left side when walking. I had no idea what was happening to me or what my quality of life would be in the future.
By February, seven months after my first attack, I received an official diagnosis. I have primary progressive multiple sclerosis. There is no cure, only “disease management”.