Makenzie

Mackenzie first experienced double vision while riding a bike with her friend when she was 13. The ophthalmologist she saw sent her immediately to get further testing which confirmed she had relapse remitting MS. On the MRI scan, she had over 90 tiny lesions in her brain which at the time she called the “holes in my head.” When she was first diagnosed, Mackenzie felt isolated, afraid to start treatment injections, and worried she would have rapid progression. She just “wanted to be like a regular kid and just enjoy things.” Even though she had a good support system with a mom who was “just like on top of everything,” it was still difficult. In college, the stress and uncertainty of not knowing what was next for her in life triggered several relapses. Makenzie’s health got worse in graduate school, and she had to drop out after three months because of a flare-up. She later returned to another graduate school program and earned a degree in public health.

Mackenzie took Betaseron injections every other day for many years, supported by her best friend who has diabetes and uses insulin. Her neurologist “put the fear in (her)” that she needed to take the medication “every other day religiously” to not have her MS get worse. When Betaseron stopped working, Mackenzie switched to Ocrevus which she did not like because of the “crap gap...the time between your next infusion” when she would not feel well at all. She also felt her mobility and cognitive fogginess getting worse which would make her feel like she was drunk. She saw a few different neurologists during this time until finally finding one she clicked with, and who “talked to me like I was a person... [and] understood what I wanted.” With this neurologist, she switched to Kesimpta. Mackenzie also uses medical marijuana which has “changed (her) life” and helped her manage her chronic pain, making her “feel like a normal person.” Makenzie has been on many types of insurance since her diagnosis including Medicaid, her mom’s private insurance, a plan from Obamacare, and then her husband’s insurance. She “hate(s) the insurance system” and finds making the financial assistance and copay programs she has accessed both frustrating and time-consuming.

In addition to her initial symptoms, Mackenzie has experienced numbness in her legs and arms, migraines, vertigo, and "the MS hug” - a constricting feeling on her chest and stomach that is painful. When she is having a relapse – often during times of high stress – she will start to feel more numbness and fatigue. Recently she has started to have some foot drop and sometimes she has slurred speech or mobility challenges when she has to borrow her grandmother’s walker. Using the walker was especially emotionally challenging given “what you would expect as you’re in your 20s.” Makenzie has struggled with her mental health since her freshman year of college and sometimes has found it difficult to find a good therapist. Last year, she started seeing a therapist through telehealth who has been helpful. Mackenzie also has a husky that is “really anxious...we’re both anxious together sometimes.” Though she is “scared for the future in terms of what happens if I relapse”, Makenzie has “faith in the medicines” and is grateful that she is “able to live a fairly normal life.”

Mackenzie has worked as a babysitter, at the police department on campus, at a local YMCA, and at a local community college. She has often not had good experiences with employers accommodating her MS. Due to COVID-19 and her being immunocompromised, Mackenzie didn’t feel comfortable going back to the office at the community college, but her ADA request was denied. She was forced to resign that job and now works from home as a medical scribe. Mackenzie is also a liaison for the pediatric MS unit, on call for anyone who wants to talk. She participates in Facebook groups to hear about other peoples’ experiences with MS. In the future, Makenzie hopes to move somewhere that is colder and is not as much in a farming area. Mackenzie's message for providers is to have “a lot more empathy and to listen to their patients and listen closely...just try to be put in our shoes.”