Margot — MS LifeLines^® Ambassador

My father was a small-town family physician, so I guess I shouldn't have been surprised when one night during my teenage years, between clearing plates and after-dinner coffee, my dad blurted out, "I think you have Multiple Sclerosis." I was athletic and on the basketball team, but I'd been having odd problems—spacing out and getting confused and even some double vision. My dad took me to the university hospital in Minneapolis for a full neurological work up. The Minneapolis doctors' final diagnosis was "potential" relapsing Multiple Sclerosis. "Potential" was fine with me—I didn't want the diagnosis and was happy to refuse it. My exacerbations were scarce and I noticed little impairment, so it was easy to be in denial for, say, another twenty years or so.

After college, with my denial firmly entrenched, I accepted an administrative position in a small hospital near Albuquerque, New Mexico. I loved my new home and life—I was swimming and playing tennis and racquetball in my spare time. When my tennis game started to go downhill, I didn't panic—still in denial—but I did go see a neurologist. He confirmed that I really did have relapsing MS. Again—I didn't take the diagnosis seriously. I just stopped playing tennis—problem solved, right?

Over time, I became very good at explaining my symptoms. I tripped because of my size 12 shoes, not my relapsing MS. When my left foot was dragging after a 5K fun run, it was a pulled hamstring—pay no attention to how it went away when I cooled down. Other symptoms I attributed to just getting older. I wanted my life to be normal—I guess that's why I failed to seek aggressive treatment. Since I was diagnosed before the advent of disease modifying drugs, I thought that attitude would always be okay.

When I was 27, I married a wonderful man who was accepting of my decision not to have children. He already had children and grandchildren, so I became a grandmother by default. We enjoy a full life and share many interests—we love fast cars and we're partners in a small commercial winery that specialized in "crafting dry table wines from fruits and berries other than grapes." Now we even work at many of the festivals around New Mexico educating people about dry wines.

At first, when disease modifying drugs were still being tested, I refused the opportunity to take them as part of a clinical study. I guess it was because I couldn't see (or refused to see) any deterioration in my condition. Now I think that I probably waited too long—but you know what they say about hindsight. A few years later, I followed up with the neurologist. He did an MRI and said he'd call in a week or so. When the phone rang that very night, I knew it couldn't be good news. It wasn't. The doctor gave me the ol' "You've-been-denying-this-for-too-long-and-not-doing-anything-about-it" speech, and, this time, with my husband's encouragement, I listened. I decided to go start treatment at last.

The doctor recommended Rebif^® (interferon beta-1a). I hated the thought of needles—I had flashbacks to my dreaded childhood allergy shots. I knew the injections were not optional though, so I spoke with some of the nurses from MS LifeLines about techniques to help me prepare for the injections—you know, warming the area up beforehand and icing it afterwards. I had the Rebiject II^® autoinjector to make the injections easier, too. I was so nervous it took me a while to follow the directions to assemble it correctly, but I figured it out in the end.

Since starting Rebif therapy, I've had essentially no side effects. I took the advice of my doctor and take my injections at night and use an analgesic, so I really don't have any problems. The occasional glass of wine helps, too—it's supporting my business! Some people do experience side effects, though, like injection-site reactions, flu-like symptoms, depression or blood cell count decreases. That's why it's best to talk to your doctor to see if Rebif is right for you.

You'd think that at this point I'd have faced the truth about my relapsing MS, but not exactly. Around this time I had to switch doctors for insurance reasons—my new doctor was a catalyst for me to come to terms with my relapsing MS. She knew about my need for independence, my denial, and my symptoms, so she recommended a neuropsychological exam—when I got the results I couldn't deny the effects of my relapsing MS anymore. My problems remembering things and multitasking weren't the result of being overcommitted, like I'd thought—they were part of my relapsing MS. Soon after, I met with my boss at the hospital to make a change in my work responsibilities. At first, I felt like I was being demoted, but I couldn't afford to think that way. The truth was that I was very lucky to be part of a supportive organization that valued me enough to find the right place for me. The changes I've made have significantly dropped my stress level, and I'm enjoying going to work again.

My message to everyone is that you can live a great life with relapsing Multiple Sclerosis, but you have to be open to making adjustments. Don't let relapsing MS be an excuse to not do what you want—if something doesn't work out, find a new way! I've done it at work and I'm doing it in my jogging. I don't go as fast as I used to, but I still get out there. If I have to walk, I do it. I don't quit—I make adjustments. Is it easy? No, not always. But if you utilize the available resources, surround yourself with supportive and honest friends and family, stick with your treatment, and maintain a positive attitude, you can lead an independent, productive and wonderful life.

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. Margot is an MS LifeLines Ambassador, and she has chosen to share her story with other people living with MS.

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