Sometimes I think I could write a book about my story with NMO.
I was 21 years old at the time, and it was the end of summer before I was ready to start my third year of university. I woke up one day and noticed that I was dragging my left leg around, it was numb and tingling, a feeling I had never felt before…eventually the symptoms got worse, I couldn’t keep my food down, I lost control of my bowel and bladder and it took multiple emergency visits before they actually took me seriously and admitted me into the hospital. I was admitted into the hospital for the first time August 25th,2013. I was put on a high course of steroids for 7 days and sent home, the symptoms eventually came back but ten times worse! My mother and I went back to emergency and told them we weren’t leaving until they got this all figured out. From that night on I was in the hospital for four months, the last month I spent at a rehabilitation centre learning to walk, run and even shower on my own.
The first month of my hospital stay remains a blur, it was the worst time and I don’t remember much till this day. The memories of living with neurological pain, not being able to walk, eye pain, not being able to shower on my own or even have any control of my bowel or bladder was a nightmare. The doctors were doing multiple tests to figure out what the heck was wrong with me! Tests included: multiple X-Rays, ultrasounds, two lumbar punctures, a skin biopsy, barium swallow exam, multiple blood tests, a gallium scan, catscans, and a total of eight MRIs. The doctors were having ideas that I might have multiple Sclerosis or even Lymphoma which required them to do a surgical biopsy of the cone of my spine. Just a few days after that surgery, all bad things like Lymphoma were ruled out and I was tested a weak positive for NMO. The doctors here wanted to make sure that this was my diagnosis and sent my blood off to Oxford England. When the doctors heard back from them, then it was time to start treatment.
I had my laptop in the hospital and all I did was research, I learned that this orphan disease deserved a different treatment than multiple sclerosis, and that basically your own body is attacking the healthy cells and last but not least that most of the research for this disease is done in the United States, which could be a contributing factor to why my diagnosis took so long.
I had the plasma exchange treatment for 5 days and unfortunately from having so many IVS in both arms for the time I was there the tissue in both arms was so bruised up and damaged that they had to put a central line in to conduct the treatment (a tube inserted into the neck). Immediately after I started steroids and was eventually sent to rehabilitation.
Today I am on Imuran (Azathioprine), this was the one drug that the government of Canada approved to my neurologist for me to take. But I am currently living with depression, and an inflammatory arthritis. I returned to school, and I am walking. Do I still feel like I am battling and overcoming what happened to me a year and a half ago? Of course! But my way of thinking is that this is not a disease that will overcome anyone that has been diagnosed with it. It is only a minor setback; positive thinking, living a healthy and active lifestyle is important…what defines us is how well we rise after falling.