I’ll never forget the day I was diagnosed with multiple sclerosis (MS). It was my 20th birthday.
I was sitting in a coffee shop with a close friend, studying for college midterms. I had just pulled an all-nighter to finish a 10-page paper, and only one more test stood between me and a long-awaited birthday celebration.
As I carefully examined all my notes, my left hand started going numb. At first, it felt like pins and needles, but the sensation quickly spread over the entire left side of my body.
I assumed I just needed to take a break from studying. I stood up from the table and nearly fell over from intense vertigo. Thankfully, my friend was pre-med and knew something was awry.
We gathered our backpacks and headed to the hospital.
After what felt like an eternity, an ER doctor came into my hospital room. He sat down beside me and said, “Ms. Horn, based on your symptoms, we need to evaluate you for a possible brain tumor or multiple sclerosis. I’m putting in an order for an MRI and spinal tap ASAP.”
That was the first time I ever heard the words “multiple sclerosis.” The next day, my results came in, and an MRI confirmed that I had 18 lesions on my brain.
I remember being scared but also feeling an immense sense of relief.
In the 2 years leading up to my diagnosis, I went from playing sports, working two part-time jobs, and maintaining a long list of extracurriculars to barely being able to move out of bed due to fatigue, vertigo, and body aches.
Any time I brought these symptoms up during a checkup, I was dismissed. My doctors would assure me that my symptoms were “just stress” or “growing pains” but I knew deep down something wasn’t right.
Receiving a diagnosis of relapsing-remitting multiple sclerosis (RRMS) was scary, but it was also validating. I felt hopeful because, with a diagnosis, I knew there were support and treatment options.
So, I threw myself into research in an attempt to regain my quality of life.
Due to my young age and the number of lesions I had, my neurologist wanted me to begin a disease-modifying treatment (DMT) right away.
The idea of giving myself a nightly injection did not sound appealing, but navigating the unknowns of MS without any pharmaceutical intervention wasn’t something I wanted to risk.
I discussed the side effects, dosage, and effectiveness of each available treatment option with my doctor. I wanted to choose the treatment that was most likely to slow disease progression. But I also knew if I wanted to see results, I had to choose a treatment option that was sustainable for my lifestyle.
After a lot of research and discussions with my doctor, we agreed that Copaxone (glatiramer acetate injection) was the best choice for me.
My parents purchased a mini fridge for my college dorm, so I could store the medication. Equipped with my auto-injector and heat and cold compresses, I started giving myself injections every evening before bed.
At first, Copaxone worked wonderfully for me. I started going weeks and months without flare-ups. My MRIs showed no new lesions and my MS symptoms became very mild.
But 2 years into my Copaxone treatments, I started having horrible injection site reactions.
When I was diagnosed with MS, I adopted an anti-inflammatory diet. One of the unintentional benefits of this diet was that I lost the 40 pounds I had gained while I was sick.
My leaner body could not tolerate the subcutaneous injections as well as it once did. I began to get large, painful welts with every injection. Because my body composition became leaner and muscular, I had fewer injection areas to choose from.
Daily injections became impossible, but not taking my medication was something I wasn’t comfortable with.
I knew it was time to make a change, so I made an appointment to discuss other treatment options with my neurologist.
When I met with my doctor, I was happy to learn that a new DMT was available — and it didn’t involve needles.
Even though Tecfidera (dimethyl fumarate) was a newer medication, the thought of taking a once-daily pill seemed like a dream come true. A pillbox was far more discreet than the syringes, welts, and bruises I had grown accustomed to living with.
Unfortunately, within a few months of starting Tecfidera, it became clear that it wasn’t the right fit for me. Whenever I took the pill, I had severe flushing, a runny nose, hives, and horrible chest tightness.
While flushing is a common side effect of Tecfidera, I felt like I was experiencing extreme reactions. When I shared my experience with my online MS support group, I was encouraged to tell my doctor about these severe side effects.
At first, my doctor didn’t feel my symptoms were severe enough to warrant a prescription change. I knew I had to find a way to show her the toll the medication was taking on my body. That’s when I decided to record the reactions each night.
Once I had extensive photos and videos of the flushing and hives, I called to schedule another appointment. When my doctor saw the extent of the side effects, she agreed we needed to find a new way forward.
On my quest for a new medication, I was referred to an immunologist. My doctors wanted to uncover why I had such intense reactions to Tecfidera.
The immunologist performed something called
The test results revealed that my body processed medications rapidly and would be prone to adverse side effects with certain drug classes.
Finally knowing why I had strange reactions to medications was a huge relief. I felt like I finally had the knowledge I needed to find the right medication for my body.
Armed with this new information, my doctor thought an infusion-style therapy would produce the best results for my body. We discussed Rituxan (rituximab) and Ocrevus (ocrelizumab), both bi-annual infusions that offered promising results.
Ultimately, I went with Rituxan, because the dosage could be tailored to my body and infusions could be scheduled every 5 months.
Off-label use of Rituxan
Rituxan isn’t currently approved by the Food and Drug Administration (FDA) for the treatment of MS, but it’s commonly used off-label by treating physicians. The term “off-label” means a medication is used for a condition it’s not currently approved to treat.
I’ve now been on Rituxan for 4 years, and the results have been amazing. I haven’t had any new lesions form, and my symptoms are manageable. I was able to go back to school and finish my master’s degree.
Without the results of the pharmacogenetic testing, I’m not sure if I would have found this medication and experienced this outcome.
Looking back, MS was a great birthday gift: This condition has made me very connected with my body’s needs.
I have learned how to advocate for myself, and I hope what I learned can help others:
- I now trust that I know my body better than anyone else.
- I documented by side effects and reactions.
- I reached out to my support group with questions and concerns.
- I considered my lifestyle and was realistic about which side effects and treatment options would work for me.
- I connected with my health insurance case manager to navigate pharmaceutical programs and medication costs.
- I remembered that the patient-practitioner relationship works two ways. I’m no longer afraid to speak up and ask my doctor questions.
Some people find the right MS treatment after one try. But for others, it may take a bit of research and trial and error.
In the 10 years since my diagnosis, the number of available treatment options has more than doubled. If your current medication is no longer working, don’t get discouraged. Know that there’s hope.
Chelsey Horn is an Atlanta-based writer and actor. She’s passionate about wellness and empowering those in the chronic illness and rare disease community to advocate for themselves. Chelsey enjoys cooking healthy meals, reading, and exploring the great outdoors with her dogs, George and Beatrice. You can follow her journey to better health @verywellchel.