Living with relapsing-remitting MS

I love to play goalie in pickup hockey games. Towards the end of 2008, after a scrum, I realized my feet were numb, and not from the cold. He didn’t leave, so I saw my GP. He ordered x-rays, which went well, and other tests, then referred me to a neurologist. This doctor ordered an MRI, which showed a stain on my brain.

The neurologist said, “You either have a tumor or you have multiple sclerosis.” To figure out what it was, he gave me a series of IV steroids, explaining that if the steroids reduced the stain, it was MS. The lesion has shrunk.

I was 29 when I was diagnosed and didn’t know much about MS at the time. The first time I went to the pharmacy to fill my prescription for my medication, I was amazed when they told me the co-payment was $ 5,000. I didn’t know the drug companies had co-pay 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 terribly afraid of needles, so once a week my wife, Megan, gave me a prick in my thigh. I took the medicine for about 3 years, until my liver increased, and I had to change the medicine. We eventually opted for a drug that involves one pill a day. I was glad I didn’t need any more injections.

When I was first diagnosed, I was working as a sports reporter for a Minnesota TV news channel. Later, when I applied for a new job at a resort in Boise, ID, I was hesitant to say I had MS. But I mentioned it, and the news directors responded very 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 be the host of the Boise MS walk. It was unbelievable. I have met some great people with MS who have become like family. Eventually my wife even went to work for the National MS Society. It was so important to us.

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I have not had a relapse for about 8 years since I started the oral treatment. I have balance problems. When I play goalie I sometimes fall for no apparent reason. And I have incredible fatigue. Megan and I have two sons, and when the 3 year old comes down for a nap, I really need one too. Sometimes I feel guilty about it, but I have learned to do what I need to do to function as normally as possible.

I cycle with my elder and Little League coach. My kids push me to do things. When you are first diagnosed with MS it is 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 will continue to do whatever I can for as long as possible.

Tips from Chris

Find a mentor: Connect with someone who can advise you on how to live well with MS. The National MS Society’s Navigation Program can help.

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To be open: Some people decide to keep their MS diagnosis private, but Chris has found that when he shares this information with others – like other parents on the Little League team he coaches – they are eager to help.

Find the right neurologist: Chris sees a neurologist in an MS clinic, where the medical team has extensive knowledge of the disease. He found the clinic through the National MS Society.

Give yourself a break: To deal with MS fatigue, Chris tries to take breaks. “Even lying down for a few minutes can be incredibly beneficial,” he says.

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