In her first column, Stephanie Towler shares her journey to diagnosis and her experience with a clinical trial as a millennial with multiple sclerosis.
I remember the day like it was yesterday: Sept. 20, 2012. I was fortunate to receive a swift diagnosis — following a couple of tests, my neurologist told me that I have multiple sclerosis (MS). At the time I thought, “Well, let the journey begin.”
My name is Stephanie and I am 29 years old. I was 22 and a super senior at the University of Central Florida when I was diagnosed. College was already a challenge, and my diagnosis added to my mountain of stress. At the time, I wasn’t aware of the symptoms of MS. I had also been experiencing numbness for a few weeks. I thought my sleepiness was due to my schedule and horrible sleeping habits. Though I was dealing with severe fatigue due to MS, I continued to work hard as I was determined to finish school.
One day while at work, my face, feet, and the entire left side of my body went numb. I tried to ignore it. However, my co-worker was a retired nurse and noticed when I started rubbing my face. She asked me what was wrong and I explained my numbness. She called my manager who sent me home.
When I returned to campus, I immediately went to the doctor’s office. She was extremely concerned about my symptoms. Over a week I had follow-up appointments where she observed my behavior and researched various disorders. Finally, she referred me to a neurologist, and following two visits and two MRIs, I was diagnosed with MS.
The diagnosis hit me hard. I was struggling to finish my undergrad while living nine hours away from my parents. Thankfully, my mom could visit, but no one fully understood the battle I faced. Lack of sleep and fatigue was making it hard to focus in class. Some days I couldn’t feel my feet and I had frequent mood swings and bouts of depression.
My mom asked my neurologist about clinical trials. At the time, a new medication called Ocrevus (ocrelizumab) was being tested to treat specific types of MS. My neurologist said that I would be the perfect candidate for the study. The trial consisted of an infusion every six months and three shots per week. It was a blind study, so I didn’t know if the infusions or shots contained the medication or if I was getting a placebo. I quickly learned that the shots were a placebo and the infusions were the medication. I believe that my decision to participate in this trial was one of the best that I made in treating my MS.
|Read on: I Am a Millennial with Multiple Sclerosis|