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.
Seven years later, I am still on a clinical trial for Ocrevus. I get the infusions twice a year and the procedure takes about six to eight hours. Since my diagnosis, I have had 27 MRIs, which is the worst part of my medical care. Battling narcolepsy, insomnia, and depression hasn’t been easy, but these disorders have been manageable.
The typical demographic for MS onset is 20 to 30 years older than me, and I have yet to meet anyone from my millennial generation with this disease. I am sharing my struggles in the hope that some readers can relate to my experience. I want my fellow millennials with MS to know that you are not alone in this battle. Keep fighting!
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