Jason

After his diagnosis in 2013 and learning more about MS, Jason traced his first symptom back to 2007. He was an avid runner who ran track and cross-country in high school and college. He recalled falling in some races but brushed it off. He considered himself “an invincible college student” and went on with his life. After he experienced numbness in his left hand, he went to a doctor who told him his symptoms were all in his head after nerve testing came back normal. When he experienced other symptoms such as bladder issues during college, he downplayed them. It was his college girlfriend, who was a nursing student, who suggested he might have a neurological disease. When he began experiencing horrible pain in both his feet in2013, Jason finally saw a neurologist who diagnosed him with advanced MS after an MRI and battery of vision, hand, and walking.

After his diagnosis, Jason began taking both disease-modifying and symptom-management medications. He began with Tysabri but had to stop taking it after testing positive for JC virus. Jason then switched to Lemtrada. After seeing a pain specialist who prescribed Methadone to control his MS-associated pain, Jason’s drugs interacted, and he lost 30 pounds in one week. After the incident, Jason received one more Lemtrada infusion and decided to stop all symptom management medications. Because the Lemtrada treatment was physically taxing on his body, Jason decided to focus on the other things that could help modify his MS symptoms and progression. He changed his diet and increased his activity levels to manage his symptoms. Jason manages his pain by mentally ignoring it and keeping his mind occupied so that he is not aware of how painful just being alive is. As a thirty-year-old male living with MS for seven years, Jason says that he can’t even imagine not being in pain and living his life any differently. Today, Jason’s MS is stable. His symptoms consist of numbness and tingling in his left hand, bladder issues, erectile dysfunction, glaucoma which may be related to his MS, and pain in his right foot that’s a little bit more severe than the pain in his left foot. Jason also experiences a small limp when he walks and a lack of endurance. He uses catheters eight or nine times a day to urinate and a cane when he goes to unfamiliar places or if he is going to be around a large group of people.

After his diagnosis, Jason remembers being all doom and gloom, and felt that his life was over. But after receiving Lemtrada, going through a divorce, seeing a psychologist, and stopping medication, Jason changed his mind set to focus his time and attention on making changes that are good for him, his body, and his “long-term viability on Earth.” Jason implemented lifestyle changes such as being active, learning to cook, eating healthy, losing weight he did not want, and visiting friends in different states. Today, he stays involved with the MS center at one of the local hospitals by availing himself as a resource particularly for younger individuals diagnosed with MS. Jason’s support system consists of a network of close friends. He says that he has accepted the fact that he is likely to die young and therefore focuses on the question “How do I get the most out of the time I have?” Jason’s advice to others is to “become a yes man and just do the things you want to do and figure out what it takes to be happy” even if “you might be in pain all the time and it might be a pain that no one else can understand, that doesn’t mean you can’t have fun and take that pain and make something good out of it, because there’s still a reason to live.” Jason’s MS does not affect his work and even to some extent, helps him to exhibit a level of commitment that other people don’t have because he must work harder than most during his 18-hour days. He hopes his story helps an undiagnosed person recognize their symptoms as MS and get treatment sooner rather than later.

Clinical Trials Experience:

The first clinical trial Jason participated in was a drug trial involving extended-release Baclofen. At the time, Jason was taking Baclofen three or four times a day and the opportunity to take it once a day motivated him to sign up for the trial. After six months, Jason informed the study team that he did not notice any change and chose to withdraw from the trial. Since then, Jason has participated in a couple of research studies, one of which involved completing a survey upon entering and leaving the trial as part of the control group. Jason also participated in another research study that aimed to research how increased activity could affect one’s outlook on MS. In this study, Jason took a survey at the beginning, talked to an activity coach throughout the study, and completed a survey at the end. While Jason hopes that the research team learned something from the trials, he did not think the studies were useful for him.

Jason’s main motivation for participating in the study was taking advantage of a chance that this could help him manage or treat his MS. While Jason is very interested in knowing the findings of the studies and has asked the study teams to provide him with a copy of the results, he has not received any information as of now. Thinking back on his previous clinical trials, Jason participated with the expectation that he would get something out of the experience, but not knowing what that something was. Now, Jason has shifted perspectives and expects to get nothing out of his research trial experiences. He simply participates in the hope that somebody else will benefit.