Nicole — MS LifeLines^® Ambassador

“Together let's re-label this thing called MS—and turn it from a "Major Setback" to let's say a "Masterful Strategy," a strategy for a better life with this condition.”

My name is Nicole, and I have relapsing multiple sclerosis. Today, I feel empowered when I tell people about my MS, but it took me a while to come out of what I call "the MS closet" and to appreciate my new life with MS.

I grew up on a farm, but fortune and love drew me to the big city where I have become something of a corporate goddess. It's a stark contrast from the cowgirl I dreamed I'd be, but I have found bliss in this corporate world. I love traveling for work and my clients, but my life has not been without its headaches.

Back in 2001, my headaches had become severe enough that I mentioned them to my doctor at my annual physical. She recommended a migraine medicine, but also suggested an MRI to rule out any other possible causes. The week after my MRI, I was at a conference in New York, when I got a call from the doctor asking me to come to her office to get the MRI results. During the appointment, my doctor read the results out loud, as her eyes filled with tears. I couldn't comprehend many of the medical terms, but I knew the tears meant something was seriously wrong. She explained that the MRI revealed a number of lesions on my brain, which was consistent with multiple sclerosis. Well, I had heard of multiple sclerosis before, but I didn't know what it was exactly. My doctor scheduled an appointment for me with a neurologist to confirm the diagnosis.

The neurologist dismissed me as healthy—she said I didn't have MS. I accepted this interpretation and ran, but at the back of my mind I knew there was something behind my curious headaches. A year went by, full of the usual concerns of family and work. Privately, I spent quite a bit of time researching MS. When the time came for my next annual physical, I asked my doctor if I could get another MRI. I wanted to understand the real reason why there were lesions on my brain and to see if there were more now.

The next week, I was attending the very same conference in New York, when a nurse called from my doctor's office to say I needed to see the doctor ASAP. I couldn't just leave the conference, but I was awfully distracted for the rest of my meetings! When I got to the doctor, the news wasn't good. My MRI revealed new lesions. My doctor had already scheduled an appointment with the same neurologist. I didn't really want to go back to the doctor who had dismissed me, but I was too saddened to ask for a different neurologist. When I got to the neurologist's office, I found she hadn't even looked at my MRI results yet. I snapped. I told her how unhappy I was that she hadn't taken the necessary time to prepare for such an important discussion. She apologized and went to review my labs. Once again, all signs pointed toward relapsing MS, but I needed a spinal tap to confirm the diagnosis.

The doctor recommended I go home after the spinal tap, but my bliss at work was calling. I headed for the office, trying to forget the pain in my back and the fear in my heart. I got as far as the office parking lot before I broke down. I sat in my car crying. It was almost like my life was flashing before my eyes—growing up on the farm, playing basketball in high school, blowing out my knee playing ball in college (had it been an early warning sign of MS?), barely getting by on multiple jobs while I was in school, and finally starting my career.

A week later, the neurologist called to confirm the diagnosis with those painful works, "You have [relapsing] MS." I didn't know how to react, so I told my husband in a very matter-of-fact way. I was worried about telling my family, but my older sister helped me figure out the best way to break the news to them. But that was it. I was determined to keep my condition a secret to the outside world; only my inner circle was to know.

At the next visit with my doctor, she suggested that I start treatment. I had been doing a lot of research and felt informed enough to make a decision. I soon started a treatment called Rebif^® (interferon beta-1a). Around this time, too, my neurologist told me that she felt a connection with me because I had pointed out her insensitivity in arriving unprepared for our important appointment earlier. I accepted her support, and we are a very strong team today.

Not long after I started my Rebif treatment, I lost sight in my left eye. My doctor explained that every patient's experience is different. For some, it can take a few months for treatment to begin to work in your system. I continued with my treatments. My sight returned and my exacerbations subsided. I have experienced no further exacerbations. This has been my experience, but everyone is different. Some people have experienced flu-like symptoms, fever, chills, and injection site reactions on Rebif. These reactions may be managed by taking an over-the-counter pain or fever reducer and by placing ice on the injection site prior to injecting Rebif. Talk to your doctor to see if Rebif is appropriate for you.

The truth is, becoming a person living with relapsing MS is the best thing that's happened to me. I finally realized that I wasn't going to worry about what anybody else thought. It was MY life, MY health, and MY MS. My priorities were now crystal clear: I had my family, was doing well with treatment, and had a bright future ahead of me no matter what this disease dealt.

Out of the blue, my neurologist called me to ask if I would like to be interviewed about my condition by a local news station. I seemed like such a positive, outgoing person to her—she was shocked to hear that I hadn't told people about my MS. I decided that this opportunity was the perfect way to unburden myself of my secret. The broadcast aired—I told some friends to tune in. No more hiding. I was officially out of the closet.

Today, I hope everyone with MS learns to do what is right for themselves. Together let's re-label this thing called MS—and turn it from a 'Major Setback' to let's say a 'Masterful Strategy', a strategy for a better life with this condition.

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