Living With Relapsing-Remitting MS

Reviewed by Brunilda Nazario, MD on December 21, 2020

photo of grandson talking wtih grandfatherI love playing goalie in pickup hockey games. Toward the end of 2008, after a scrimmage, I realized that my feet were numb, and not from the cold. It didn’t go away, so I saw my general practitioner. He ordered X-rays, which came back fine, and other tests, and then referred me to a neurologist. That doctor ordered an MRI, which showed a spot on my brain.

The neurologist said, “You either have a tumor, or multiple sclerosis.” To figure out which it was, he gave me a round of IV steroids, explaining that if the steroids shrank the spot, it was MS. The lesion did shrink.

I was 29 when I was diagnosed, and didn’t know much about MS back then. The first time I went to the pharmacy to fill the prescription for my medication, I was stunned when they told me the copay was $5,000. I didn’t know that pharmaceutical companies have copay assistance programs. Once I figured that out, it was a lot easier.

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My first medication involved an intramuscular injection, and I’m deathly afraid of needles, so once a week my wife, Megan, would give me a shot in my thigh. I was on the medication for about 3 years, until my liver numbers became elevated, and I had to switch medications. We eventually settled on a drug that involves one pill a day. I was happy to not need injections anymore.

When I was first diagnosed, I was working as a sports reporter for a TV news station in Minnesota. Later, when I applied for a new job at a station in Boise, ID, I was hesitant to share that I had MS. But I did mention it, and the news directors responded so well. They had a relationship with the local chapter of the National MS Society. I was hired by the station, and they asked me to serve as the host of the Boise MS walk. It was amazing. I met great people with MS who became like family. Eventually my wife even went to work for the National MS Society. It’s been so important for us.

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I haven’t had a relapse in about 8 years, since I started the oral medication. I do have balance issues. When I play goalie, sometimes I fall over for no apparent reason. And I have incredible fatigue. Megan and I have two sons, and when the 3-year-old goes down for a nap, I definitely need one too. Sometimes I feel guilty about that, but I’ve learned to do what I need to do to function as normally as I can.

I ride bikes with my oldest and coach Little League. My kids push me to do things. When you’re first diagnosed with MS, it feels like the worst thing that can happen, but after living with the disease for as long as I have, you realize, “I’m actually really lucky.” I’ll continue to do as much as I can for as long as I can.

Chris’s Tips

Find a Mentor: Connect with someone who can provide guidance about living well with MS. The National MS Society navigator program can help.

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Be Open: Some people decide to keep their MS diagnosis private, but Chris has found that when he shares this information with others -- such as other parents on the Little League team he coaches -- they’re eager to help.

Seek Out the Right Neurologist: Chris sees a neurologist at an MS clinic, where the medical team has deep knowledge of the disease. He found the clinic through the National MS Society.

Give Yourself a Break: To cope with MS fatigue, Chris tries to take rest breaks. “Even lying down for a few minutes can be amazingly beneficial,” he says.

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Sources

SOURCE:

Chris Nettleton, Champlin, MN.

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