Jim

When Jim first went to the doctor with concerns about his speech and energy levels, his doctor dismissed his symptoms. Feeling “really stupid” and “self-conscious about being labeled with a negative label” like “hypochondriac,” Jim didn’t go back to this doctor. A good relationship with a new doctor made a “huge difference” for Jim: “feeling trusted is just a big deal.” Jim was diagnosed with MS in his late 30s. Though this doctor diagnosed Jim with relapsing-remitting MS, Jim thinks his MS would now be labeled secondary progressive as his symptoms have gradually worsened over time.

Soon after Jim was diagnosed with MS at 37, he signed up for a clinical trial. At this time, he felt scared and “didn’t know what else to do.” Jim also comes from a science background and decided participation in the clinical trial was a “good opportunity to put my money where my mouth was” as a strong advocate for research. The “new weird clinical trial” involved swallowing parasite eggs. Jim was one of 5 enrollees in the first phase. He appreciated the “great amount of medical attention that wasn't part of my insurance plan,” including the large amount of his personal health data from the trial that his physician was able to access. Jim also enjoyed being “part of something bigger for everybody else.” Different from his usual health care for his MS, Jim noticed “when you do clinical trials, a lot of the observations are much more formal” because of the protocols that need to be followed. As a biosafety engineer and member of IRB committees, Jim “understood why it has to happen the way it happens.” Jim is a strong advocate for clinic trials, presenting to groups of people living with MS where he answers questions about clinical trials “as a lay person with fairly strong scientific knowledge.”