My MS Story

I was officially diagnosed with Relapsing-Remitting Multiple Sclerosis (RRMS) on December 13, 2023. My hope in sharing this is to spread awareness about why it is so important to advocate for your health. Here’s my story.

About 10 years ago, I began experiencing the most random health issues. I was always in some sort of pain, but it was never in the same place. It felt like my body was a pinball machine. I was constantly going to see my primary care provider (PCP). Eventually, I started to feel like a hypochondriac, and he was essentially telling me it was all in my head—medical gaslighting at its finest.

After countless trips to the ER for various issues, racking up medical debt, and experiencing more migraines than anyone should have to endure, I made the decision to leave that practice. I had to advocate for myself because I knew something was wrong.

The first time I sat down with my new PCP and explained my health history to her, she looked at me and said, “I believe you, and we are going to figure this out together.” I cried because I knew I had finally found someone who would listen to me. That moment was a turning point.

Thanks to a former coworker who helped advocate for me, I was able to get an appointment with her phenomenal neurologist. I initially began seeing this neurologist simply to help manage my migraines. I started receiving two nerve block shots in my head every three months. The minute of pain from those shots was absolutely worth it to avoid migraines that would otherwise send me to the ER. While the nerve blocks helped with my migraines, there were still so many other symptoms that were difficult to diagnose.

My family and I are extremely close. In the fall of 2019, we found out my Dad had cancer and he passed that December. I have never felt such heartbreak in my entire life. My body went through what I can only assume was my first relapse, knowing now that I mostly like had MS even back then. I had been staying with my mom, and one night she took me to the ER after I experienced a non-epileptic seizure and had difficulty speaking. They ruled out a stroke but did no further testing. Once again, I was told it was all in my head and sent home to rest.

Shortly after my dad passed, my mom and I decided to each sell our homes and build a house together. It made sense to skip the in-between chapter so neither of us would be alone. At the time, we had no idea how much that decision would help me in the future.

As I continued seeing my neurologist for migraines, more and more symptoms began appearing. The short list included:

• Right-sided numbness in my face, feet, legs, hands, and neck/shoulders
• Memory and speech issues
• Double or blurry vision and eye pain
• Uncontrollable bladder and bowel issues
• Muscle spasms and tremors
• Vertigo-like dizziness
• Constant fatigue
• A tight squeezing sensation around my rib cage (which I later learned was an “MS hug”)

I was always in some kind of pain, but you would never know it because I always tried to keep a smile on my face.

Fast forward to the first week of December 2023. I went to the ER for what we thought was another migraine, but nothing helped alleviate it. A few days later, the entire right side of my body went numb. I returned to the ER so they could rule out a stroke. Once again, I was told I was fine and sent home to rest.

I followed up with my neurologist, and she recommended we do an MRI just to check. At the time, I was about to start a brand-new job on Monday, December 11. I was in a lot of pain that day, but I still showed up. Then, on December 13—yes, my lucky number 13—my neurologist called to say they had found lesions on my brain and a small one on my spine. My neurologist, who specializes in MS, finally said the words I had been waiting years to hear: “You have Multiple Sclerosis.” Did I cry? Of course. But it was because I finally had answers. I wasn’t crazy.

My neurologist had me come into the office multiple times that week for aggressive steroid infusions to help me feel better while we continued testing. I ended up missing my first week of work. Legally, I didn’t have to tell my new boss about my medical situation, but I chose to. His response was, “Celia, I hired you for a reason, and we will get through this together.” Cue the tears again.

The next step was a lumbar puncture (spinal tap), which allows doctors to examine the spinal fluid for protein levels, white blood cells, myelin, and other markers. My numbers were off the chart, providing further confirmation of the diagnosis.

While there isn’t a cure for MS, medical advancements for slowing its progression have come a long way in the past decade. After discussing treatment options with my neurologist, I chose to start Ocrevus. I have now been on this disease-modifying therapy (DMT) for two years.

Before my diagnosis, I had been on a journey to become a mom through adoption. I had always wanted to be a mother, but as the years passed, I never married and never had children of my own. I knew adopting a baby as a single woman would be challenging, but I wasn’t going to let that stop me.

When I was diagnosed with MS, I experienced a tremendous amount of grief. After a lot of prayer and soul-searching, I came to the realization that motherhood may not be in the cards for me. Raising a child is challenging even for two healthy parents. Doing it alone while managing a chronic illness would be incredibly difficult. I deeply admire anyone who has been able to do it, but it still hurts knowing that path may not be mine.

I have been performing on stage in musical theater since I was a child. Singing and dancing are like the air I breathe. I was fortunate to build a successful professional performing career in the Washington, DC area, where I’m originally from. I used to perform in multiple productions each year. Since my diagnosis, I’ve had to scale back. Now I aim to do one production a year and a few singing gigs here and there.

My first musical after being diagnosed was incredibly challenging. It was a high-energy role that took a lot out of me, but I refused to give up. That performance ended up earning me a nomination for a Joanne Woodward Award for Best Supporting Actress—think of it as our local Tony Awards. I won! When I got up to give my acceptance speech, I cried again. I spoke openly about my diagnosis and shared that there were performances where I was in significant pain, but no one in the audience would have known. I guess I really was the best actress.

I continue doing theater because I refuse to let MS stop me from doing what makes me happiest in the world. I will not let MS define me. Performing keeps my body active and my mind sharp—use it or lose it, but be smart about it.

For years, I fought for my health. I fought for this diagnosis. And I will likely have to fight my own body for the rest of my life. But I am a strong warrior, and I will keep fighting. Yes, I grieve the person I used to be—but I’m okay. I could choose to be angry at the doctors who told me it was all in my head. I could fall into depression. I could let this diagnosis define me. Instead, I choose to move forward and live my life like my blood type – be positive!

MS is often called an invisible illness and looks can be incredibly deceiving. I may look fine on the outside, but inside my body is fighting itself. I’m not being dramatic. I’m not faking it. And I’m not lazy. I’m simply learning how to navigate my new normal. Every day with MS is unpredictable, but with the support of my doctors, family, and friends, I know we will get through this together.

My hope in sharing my story is that it encourages someone else to advocate for themselves. You know your body. Listen to it—and make sure your doctors listen, too. The MS community isn’t something anyone wants to be a part of, but this community has some of the most amazing, supportive people in it.