Life With Relapsing-Remitting Multiple Sclerosis

By Samantha Payne Smith, as told to Keri Wiginton 

I got married in 2014. I remember waking up with numb feet a couple months after we bought our house. But I didn’t think much of it at the time. I could always feel the floor again once I’d finished brushing my teeth. 

Later on, the sharp, nagging, sometimes dull pain in my neck started. It got so bad, I couldn’t turn my head all the way. I’d walk around work wearing an ice pack. And sometimes my arm felt heavy, like something was weighing it down. 

I knew I hadn’t hurt myself from lifting something heavy or working out. But I thought it was a muscular problem. Or maybe it was migraines. 

The ongoing pain in my neck and shoulder lasted for a while before I got any imaging tests done. My doctor gave me muscle relaxers at first. Then she sent me to see a physical therapist. I ended up going to see a chiropractor on my own. That helped, but the pain never really went away. 

I wasn’t diagnosed with relapsing-remitting multiple sclerosis (RRMS) right away. That came in May 2021, when I was 39. But I don’t blame my doctor. Unlike what a lot of Black women go through, I felt like she listened to me and took my concerns to heart. But because my pain level would go up and down so much, it was hard to pinpoint the cause. 

Searching for Answers

I went back to my doctor. I told her I was still having pain every day, and it’d been 2 years. We needed to figure out what was going on. I’d seen her for more than a decade at that point, and I felt sure she would do something to help.

I asked for a CT scan, but she sent me for an X-ray instead. It didn’t show anything, so she ordered an MRI of my neck and shoulders. Almost by accident, they found the lesions on my brain and spinal cord.

I remember looking at my doctor while she read me the report. I saw the lights kind of leave her body, so I knew something was wrong. And then we thought about how I’d been having chronic urinary tract infections (UTIs) for the past 8 years. I guess she felt like she’d missed something.

She referred me to a neurologist to confirm the diagnosis. His bedside manner wasn’t great, but he did the right follow-up tests. He ordered a full brain MRI, then did a spinal tap. And that’s when they landed on RRMS. 
 

Finding the Right Doctor

Things didn’t work out with my first neurologist. I felt like he talked at me, not to me. And I don’t know if there’s a nice way to tell someone they have RRMS, but he was looking at his computer when he said it. It felt cold, and I was confused. 

I’d heard of multiple sclerosis, but I didn’t really know what it was. And when the doctor didn’t ask me if I had any questions, I knew he wasn’t right for me. 

I searched for a Black female neurologist. But I didn’t have much luck finding someone who wasn’t super far away. So I went back to my regular doctor for advice. 

The person I see now isn’t female or Black, but I like him a whole lot. He asks thoughtful questions about my symptoms and looks me in the eye when we talk. I feel like he really listens. Most of the time, he just lets me talk about what I’m going through. And my visits are very long.

Starting My Multiple Sclerosis Medication 

I’m still trying to wrap my head around the details of my disease. But I know the lesions on my spine are serious. And because of that, my neurologist urged me to start a disease-modifying treatment (DMT) right away. Though, I tried a drug-free approach at first.

I opted for lifestyle changes partly because there’s no cure for MS. And I wanted to help myself in more holistic ways: I changed my diet. I started exercising more. I meditated.

Then, maybe 6 or 7 months after my diagnosis, I was in so much pain that I couldn’t move my neck. When I told my doctor about it, he pressed on me the importance of early treatment. It’s not going to cure you, he told me, but medication can help stop the progression.

He told me that lots of people come to him with loss of vision or feeling. But my symptoms were manageable, and I was in a good space to live a normal life. Aggressive treatment could help keep things that way.

Finding Support

The support I get from my friends and family is beautiful. I love them for it. But it’s important that I have other outlets. For starters, I see a therapist who helped me work through the funk I was in after my diagnosis.

I also seek out online support groups geared toward Black women. One is called Women of Color with MS. Another is We Are Illmatic, and I love the energy in this group. It’s filled with what I call powerhouse women.

We talk about lots of stuff in these groups. Sometimes you might vent about your bad day or how your family doesn’t really get what you’re going through. Or we’ll celebrate each other’s wins. For instance, maybe someone mentions their new baby or how they no longer need their wheelchair.

But when you get into these groups, it’s important not to take on everyone’s symptoms. I did that for a while. MS affects everyone in a different way. I had to stop and ask myself: Why are you limiting yourself based off what you’re afraid might happen?
 

Living Life to the Fullest

My entire perspective on life has changed since my diagnosis. Even though I’d rather not have RRMS, the disease forces me to pay closer attention to how I feel and to everything around me. It’s given me the chance to learn more about who I am and what I can do. 

For example, I started my own business. I was working in a salon owned by someone else. She shut down one week, and I had my own space the next. If this would’ve happened 2 years ago, I don’t know how long I would’ve sat around trying to figure out the next thing to do. 

Everybody knows that tomorrow isn’t promised. But for me, I feel like RRMS is this big glaring light telling me to keep going. It says: You have things to do. Don’t leave anything undone. You deserve to live the best life you can, especially while you can. 

Samantha Payne Smith, 41, is a multiple sclerosis advocate and owner of Samantha CurlHaus in Chicago. She gets support from her husband, children, family, and friends.