David S.

Before he was diagnosed, David S. did a lot of “doctor googling” to figure out why he was experiencing “ghost pain” - pain in his arms and legs that would come and go. Even though he was eager to get a diagnosis, David S. waited to see his primary care doctor until the healthcare law passed that prevented discrimination against people with pre-existing conditions. Finally getting a diagnosis was a relief for him because “when you have this pain that wasn't there and disappears, you know, MS will gaslight you if you're not paying attention...it will [um] mess with your mind.” He was referred to a neurologist who wanted to start him on infusions, but doesn’t like needles and didn’t feel comfortable with this doctor so found another. He also did a lot of research on different medications, and went on an autoimmune protocol which involved changing his detergents, soap, and lotion to products that didn’t have any smell to “make things [uh] as basic and pure as possible.” The protocol didn’t end up working for David S. and he started on Copaxone injections. When his neurologist wanted to change him to a different medication, he decided to participate in a human stem cell transplant as part of a clinical trial. Currently, David S. doesn’t take any medications aimed to slow the progression of his MS.

David S.’s MS symptoms included fatigue and heat intolerance which used to make him sick and nauseous. Since his stem cell transplant, he no longer experiences heat intolerance, though still often feels tired especially as the day goes on. He has issues with his vision which “hampers (his) existence” because he can’t see the TV and has trouble reading. David S. also has challenges with his balance, particularly as he gets more fatigued during the day. He saw a physical therapist who helped with exercises. David S. was “okay with being disabled...had gotten to that point where (he) was doing well with that” but then “fell into a hole” when the COVID-19 pandemic started.

David S.’s MS affected his previous work in the business he owned, as well as his relationship with his estranged husband who is currently his roommate. David interacts with his mom but doesn’t have many relationships with others these days: “I don't have enough room in this head for somebody else and all their stuff too...the only people that I know don't really want to deal with me because of my disabilities.” The pandemic combined with his MS has made life particularly difficult for David S. who feels “shut in” sitting in his house most of time and has experienced some moments of despair. He hopes to move to a better climate that is less warm. David S. advises other people with MS to do “whatever research that you can from as many different sources as possible” and feels that “being kind to someone like that, who's sick, would, I think, would be greatly appreciated.”