I Was 25 & Active When My World Was Turned Upside Down By Debilitating Symptoms

I've always been an active, independent, and competitive person. Growing up with three brothers, I played basketball, volleyball, soccer, and swam—pretty much every sport imaginable. By the time I was 25, that evolved into consistent kickboxing. So when I first noticed numbness and tingling in my arms and legs, I dismissed it as a pinched nerve and booked a chiropractor appointment.

Instead, the chiropractor said that pain and tingling crossing the mid-plane of the body indicated something much more serious. He was the first person to mention multiple sclerosis as a possible cause. I thought he was crazy. That could never happen to me. After all, I was healthy, active, and living life fully.

The next day, the pain worsened, so I headed to urgent care, where I was sent right to the emergency room. Urgent care recommended a series of MRIs and other tests, but after an initial neuro exam, the emergency department thought the tests were unnecessary. They took X-rays and sent me home.

Over the next six months, I saw dozens of doctors and had countless hospital admissions and tests done: multiple spinal taps, countless MRIs and blood draws, plus visits with neurologists, neuro-oncologists, and infectious disease doctors. I was poked, prodded, and talked about like I wasn't lying in bed in front of the doctors.

All anyone could tell me or my parents was that I had a demyelination disease2 (a term encompassing conditions where there's damage to the nerve coating). It's similar to when the rubber coating on your phone charger starts to break down. Eventually, your phone needs to be in the perfect position for it to charge. That's what was happening in my spine.

During a flare, each lesion compromised my spine's myelin sheath or protective coating. Each part of your spine is responsible for a different function of your body, and my flares affected the mobility of my extremities and vision.

But since my symptoms were a bit of a mixed bag, doctors could not be certain of exactly what I had. I didn't neatly fit into a diagnosis box. The other disease often discussed was neuromyelitis optica (NMO), or the angry cousin of MS.

Running out of options, my doctors started me on a form of immunotherapy that could be used for both MS and NMO. It's a powerful drug traditionally used for non-Hodgkin's lymphoma and lupus. They basically threw me a Hail Mary. The first time I received treatment, I had an allergic reaction where my throat closed, and I broke out in hives for eight hours. But ultimately, it was the best option I had at the time.

The doctor's appointments and tests continued. From the first ER visit to the first hospitalization to getting a diagnosis, the whole process was unbelievably terrifying. I lost and had to regain a lot of my faculties. I had to do occupational therapy to relearn how to use zippers, hold a toothbrush, and walk with limited sensation on my left side. I had no idea what was happening to me or what my quality of life would be going forward. 

While most people have one flare in their first year, I had six in five months. And the thing about MS is that when you think you are having a flare, your only option is to go to the emergency room. Each flare is different from the next, presenting itself in different ways based on where the lesion is on your cord. And the only way to confirm you have an active lesion is with an MRI. But once there, you're at the bottom of the totem pole, because a flare isn't life-threatening. At one point, I sat in the ER with my parents for 12 hours with paralysis and pain, waiting to be seen. 

It was (and still is) hard to advocate for myself physically and mentally because I don't look sick. You'd never know by looking at me that in the last five years, I've had 184 blood draws, 32 MRIs with contrast, 23 rounds of steroid infusions, and 15 rounds of immunotherapy, to keep my MS at bay.

I'm a very strong-willed person by nature, but it's been an uphill battle mentally. I've had to take time off work, my social life has changed drastically, and I've moved 800+ miles away from my support system to get better care. I've had to rely on friends in a way I never had before. For me, asking for help feels like a burden. I never want to inconvenience or bring additional stress to people's lives—it often feels like I am doing just that.

Cooking ended up being a great form of physical and emotional therapy for me. Remastering tasks I took for granted, like pouring flour into a bowl or using a knife, became accomplishments. After an OT recommended I find ways at home to work on my finger dexterity, my aunt Kathy came over with pounds of crab legs and sat with me as I meticulously cracked and removed the meat for our dinner. It took hours. 

For years, I was hiding in plain sight since people couldn't see my MS. All that changed in late 2022.

In 2022, my immunotherapy was starting to take its toll. I had little to no antibodies left in my blood from the Rituximab, resulting in constant infections, fevers, and colds that never went away. My quality of life was quickly deteriorating from simple tasks like going into the office or going out to dinner. With the help of a new doctor on my care team, an immunologist, we made the difficult decision to start doing blood plasma infusions, called intravenous immunoglobulin G, or IVIgG. How it works is antibodies are isolated from donated blood, providing recipients with a first line of defense against infection. 

Something I often think is overlooked is how expensive it is to be sick. Rituximab, the immunotherapy I'm on, costs tens of thousands of dollars for a single infusion. And the whole insurance process takes an additional toll on your body. Being sick is a job on its own, and dealing with our health care system is another one.

I've spent countless hours in waiting rooms, on hold, and writing telehealth messages to battle this disease. I carefully track my PTO and paycheck since simple checkups can be an all-day affair, plus infusions, MRIs, copays, and unplanned ER trips. I rarely have PTO for fun. I've missed family events, Taylor Swift concerts, and I even have to impede on others' PTO to take me to and from appointments. 

It's been five years since my symptoms started, but my advice to those going through this remains the same: Continue to fight for yourself because there are so few people who will do that for you. You need to be your biggest advocate and find the people in your life who will go to battle for you. Don't apologize. Your concerns and questions are valid. Ask and continue to ask. Ignore the ignorance.