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It Took 184 Blood Draws & 32 MRIs To Be Diagnosed With This Aggressive Disease


Ashley Curtis

November 11, 2023

Contributing Writer

By Ashley Curtis

Contributing Writer

Ashley Curtis pursued her education in Communications at the College of Charleston and now channels her passion for digital marketing, seamlessly by blending visual and verbal communication to elevate brands’ digital presence and foster community engagement.

Image by Nuria Seguí x mbg creative / Stocksy

November 11, 2023

While some health issues are visible to the outside world, many people face chronic conditions that don’t have externally visible signs or symptoms—also known as invisible illnesses. In this mindbodygreen series, we’re giving individuals with invisible illnesses a platform to share their personal experiences. Our hope is their stories will shed light on these conditions and offer solidarity to others facing similar situations.

I’ve always been an active, independent and competitive person. Growing up with three brothers, I played basketball, volleyball, swimming, soccer—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.

By the time I retreated to my parent’s house, the numbness had spread down my left side and wrapped around my torso. I would later learn this is called an “MS hug.” By that point, I couldn’t walk without assistance. The next day, new symptoms arrived. Besides numbness throughout my body, an excruciating electrocution feeling (called Lhermitte’s Sign) developed down my neck and spine. The left side of my body was paralyzed. I was seeing spots and having vision issues, too.

Getting a diagnosis

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 disease (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. 

By February, seven months after my first flare, I got a formal diagnosis. I had primary progressive Multiple Sclerosis. There is no cure, only “disease management.”

Life after my diagnosis

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. 

After four rounds of immunotherapy in Charleston, SC, the neuro-oncologist administering my treatment referred me to Mass General Hospital in Boston. I was accepted as a patient in April and swiftly uprooted my life the first week of May, leaving behind my family, friends, and job to better battle my prognosis.

Learning how to live with MS

It was (and still is) hard to advocate for myself physically and mentally because I don’t look sick. You’d never tell by looking at me that in the last 5 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.

But my friends and family near and far have never stopped showing up for me. Boston-based friends became my surrogate family and support system in a new city while a global pandemic was underway. One of my best friends even has a special ringtone for when I text or call—that way, she knows to check her phone immediately.

You’d never tell by looking at me that in the last 5 years, I’ve had 184 blood draws, 32 MRIs with contrast, 23 rounds of steroid infusions, and 15 rounds of immunotherapy.

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. 

With time, determination, and a lot of frustration, normalcy had returned to my life. I started to master the management in “disease management,” understanding my limitations, pushing my boundaries to a healthy degree, and resuming my everyday life.

The cost of chronic illness

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. 

Every four weeks, I sit in a chair at the infusion center, hooked up to a machine to receive plasma, and think about how I am indebted to those who donate. You see, it takes between 3,000 and 10,000 people to donate plasma to make one IVIG infusion possible for me. These blood donations are so unbelievably important for countless patients. And it doesn’t matter your blood type—anyone can donate.

Something I often think is overlooked is how expensive it is to be sick.

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 check-ups 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. 

With MS, if not chronic illness in general, it’s not about finding the treatment that will cure you, but finding the treatment where the benefits outweigh the costs and the side effects are the most manageable. While it sounds terrible, immunotherapy and IVIG have helped tremendously in keeping me healthy by minimizing my number of flares.

What I would tell others in my situation

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 that 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. 

Unsolicited advice will never go away, but you’ll learn to tune people out who recommend unfounded remedies. And, most importantly, take those days to be tired, sad, and exhausted. Be whatever you need to be, because each day is a new battle. 

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