Tim — MS LifeLines^® Ambassador

Along my uncharted path of life with relapsing MS, I faced a question that I guess everyone has to confront at some point—who and what are you?

About five or six years before I was diagnosed with relapsing MS, I had what my doctor and I now believe must have been an early flare up. It started with some odd pins and needles feelings, and then, within a week, I could barely walk, and I'd lost feeling in two fingers on each hand. I didn't know what was happening—just that suddenly everything I had been doing was in jeopardy. I had moved to the U.S. from England when I was fairly young, fell in love with and married an American, and started building a life with her in New England. Between my stressful job and our young son, I had my hands full—sudden inability to walk wasn't on the schedule.

To make a long story short—with the help of intravenous steroids, my new neurologist got me walking again. I was so thankful to have recovered from this brush with disability, I felt like a new man. I'd been a terrible worrier before—micromanaging and over planning every aspect of my life. As I recovered, I could suddenly see that I was a very lucky man and that being a dad and a husband could and should be my priority. I learned to relish the gifts that I'd been given, including my restored health. Eventually, I changed to a less stressful job, and my wife and I made it a priority to travel with our son. I even started practicing Tae Kwon Do. Life was good.

Time passed and I felt great. I continued to do my annual checkups with my neurologist, but I could hardly see the point—I knew that I was fine. So it was that I found myself blithely going through the familiar examination motions just before Halloween in 2005. My calm lack of worry was totally blown when the doctor said I was suffering from something called internuclear opthalmoplegia—a classic symptom of Multiple Sclerosis. He said he would need to do an MRI to confirm it, but with my previous flare up and the new symptoms, he was pretty confident that I did indeed have relapsing MS.

For some people, finally getting a diagnosis can be a relief—but not for me. I had worked so hard to create a new and better life for myself and my family, and now the bottom had suddenly fallen out.

My neurologist was great—once the diagnosis was confirmed, he presented treatment options, including disease modifying drugs, and explained all the reasons to hope. I'd honestly believed that MS was untreatable, so it was good news—but it wasn't enough to pull me out of my gloom. Fortunately, my wallowing didn't affect the pragmatism with which I made my treatment choice. My doctor and I discussed the advantages and disadvantages of various treatments, the efficacy and side effects of each—and my needle phobia. Together, we decided that the treatment offering the best chances for managing my relapsing MS was Rebif^® (interferon beta-1a). My wife and an MS LifeLines nurse helped me through my initial needle phobia, and now I can use the Rebiject II^® autoinjector, which makes the injections even simpler for me.

My doctor also told me about the possible side effects of Rebif. Two common side effects of Rebif—"flu-like" symptoms and injection site reactions—don't sound too pleasant. In my case, the flu-like symptoms are manageable. Right before bedtime, I take an analgesic as the doctor recommended, then I give myself the shot and go to bed. Although in the early days I felt a little crappy in the morning, it wasn't too bad. After a couple of months, I stopped having any lingering effects in the morning at all. I haven't had any problems with my injection sites. Of course, everybody reacts differently. Some people experience injection site reactions, depression, abdominal pain and increased liver enzymes. You should discuss treatment options with your doctor to find the best choice for yourself.

Although my fear of needles subsided quickly, the psychological effects of my diagnosis lasted much longer. I knew things were bad when I realized that I had stopped looking at the sky. I once read that about half of all people take every opportunity to look up at the sky and revel in it. If you're not a sky watcher, not looking at the sky probably sounds like nothing. It was something big to me, though. And, if my miserable wallowing was not making me any happier, it was working even less well for my family. My wife suggested that I get myself some professional counseling. "Suggested" is a kind way of putting it, I guess. It had a "that was not a request" ring to it—it was the push I needed.

Today, I know who I am. I'm Dad, I'm a very lucky husband, and I'm a happy man. Sure, I have relapsing MS, but MS isn't what I am.

Although I was only diagnosed a little over a year ago, I've had relapsing MS for at least seven years, and it hasn't stopped me from living a full life so far—and it won't. I'm still doing Tae Kwon Do—I've even been competing in my age and weight division—and I'm taking care of myself in other ways. I'm living a healthier, simpler lifestyle, I rest when I need to, and I'm taking Rebif. One year after my relapsing MS diagnosis and the start of treatment, I had a follow up MRI. It showed that I hadn't developed any visible new lesions. (The exact correlation between MRI findings and the current or future clinical status of patients, including disability progression, is unknown.)

When I was first diagnosed, I lost my perspective for a while, but now that I've found it again—I'm holding on. I hope everyone living with relapsing MS will do the same.

This story reflects the personal experience of one person, and others can be different. Results and experiences vary from patient to patient. It is best to contact your doctor to discuss what's best for you. Tim is an MS LifeLines Ambassador, and he has chosen to share his story with other people living with MS.

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