I knew nothing about multiple sclerosis (MS) before 2012, including the cause, the cure, or any other details. I had so many unanswered questions about how I would live with MS when I was diagnosed. I had never heard of treatment for MS and was unsure of the outcome.
Starting a trial
When it was time to see my neurologist, my mom was with me. She didn’t know what my diagnosis and MS journey would entail, but she knew what to ask the doctor. The first thing she brought up was clinical trials. I didn’t know what she was talking about.
Clinical trials are studies done by experts to test a certain investigative medication or procedure. I always thought of participants as guinea pigs or test dummies, but I was wrong. My doctor recommended a study for me and I started treatment less than a week later.
How it works
The study consisted of an investigative medication and a placebo. I had to give myself shots three times a day. I also received infusions every six months. I had to go the doctor often, and magnetic resonance imaging (MRI) was done regularly to monitor the lesions on my brain.
Giving myself shots was a challenge. Inflicting pain on myself was hard, and needles were not something I was fond of. However, I eventually overcame that fear and learned to give myself shots with ease.
My infusions continued every six months. Bloodwork was frequent so that my levels could be monitored, and an MRI was scheduled every three to six months. This was the worst part of the trial. I had to learn to tolerate the machine and process very quickly, which is something I never imagined having to do.
A few months passed, and I realized that I felt better after the infusions, whereas the shots didn’t seem very effective. I forgot to give myself the shots a few times and nothing seemed to change. I went in for a visit, and my neurologist revealed that the infusions were the study medication and the shots were a placebo.
Continuing back home
I decided to move back home to North Carolina, so my neurologist referred me to another one that was part of the same study. When I met her for the first time, she said there would be no placebo, just the study medication, with infusions every six months. My neurologist was very passionate about the medication and explained that everyone in the study had positive results. I had yet to experience a negative result, so I was hopeful.
I have been on the trial for seven years now. This opportunity has been so beneficial to me and my treatment. I have a team of nurses that follow up with me regularly and that I can always contact with questions. The study medication, Ocrevus (ocrelizumab), is now available to everyone.
Taking a chance
Many people told me that clinical trials can be risky because you are essentially a test subject, but being the test subject has changed my life. My MS is controlled and I don’t experience any symptoms. A medical team is there whenever I need them and my neurologist helps with any other issues I face as a result of my MS.
While every person is different, and every medical experience is different, joining a clinical trial was one of the best things I have done. If you are considering participating in one, make sure to discuss it with your medical team in advance.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.