Elizabeth — MS LifeLines^® Ambassador

Relapsing MS is not always disabling—but fear is. At first, I was scared because I didn't know much about MS, and I certainly didn't know the facts about MS management and treatment options. I also didn't know about the community of people out there living great lives with relapsing MS. I felt very alone.

Since I was about eleven years old, I've battled mysterious symptoms: fatigue, moodiness, night terrors, and difficulties sustaining sleep at night. Many people dismissed my complaints. They'd say I was a hypochondriac. Even doctors gave me strange diagnoses like low blood sugar or living the "college lifestyle." None of their suggestions helped—so I continued to live with my strange symptoms and the people in my life lived with them, too. When I was a teenager, my family walked on eggshells around me because I was so isolated and lonely, I'd fly into a rage with no provocation. Even my senior yearbook mentioned my constant sleeping in class. Eventually, just months before my 21st birthday, I was diagnosed with the sleeping disorder, narcolepsy. It felt as though I'd been holding my breath since I was eleven, and suddenly I could exhale. I'd known something was wrong. But, it was still tough.

It can be a little difficult staying positive when you're known—not for your great legs or charming personality—but for your ability to fall asleep anywhere, anyhow, doing anything. But I learned. I learned to laugh at myself—someone mumbling in her sleep and drooling all over her mid-term exam/textbook/blind date can be real comedy. Keeping a positive attitude became a critical part of my personal growth.

So, I'd learned to cope with my narcolepsy and the other symptoms I still had sometimes. I was out of college and working for a large ophthalmology practice. One morning, Wednesday, May 21, 2003, I woke up for work feeling a little off, not quite myself. It felt like my body was weighed down with concrete blocks. I'd had some dizziness and weakness in my left arm a few months ago, and that was all back, as well as some difficulty speaking clearly. Still, I thought it was nothing a little coffee couldn't fix. At work that morning, one of my co-workers quietly approached me and asked if I was feeling okay. She'd noticed my slurry speech and clumsiness and was concerned. It was a slap in the face—I couldn't just write this off. Luckily, our practice had two neuro-ophthalmologists on staff. One of them examined me briefly, then looked me in the eye and said, "You need to go to the emergency room immediately."

I went. My mom came to join me. I had many, many tests, including an MRI. It was very scary. There was a point, while I was sitting in a wheelchair wearing a hospital gown and a sheet waiting for the MRI, when I imagined myself making a run for it—I wanted out of there. Of course, then I pictured the next scene—me crouched under a car, or something, as nurses and doctors tried to coax me out of my hiding place. Uh, no. I stayed. After a few hours, the ER doctor broke the news to me and my mom: there was a two-centimeter something just above and slightly into the right thalamus of my brain. It could be an aneurysm or a tumor. He added that it could be a sign of multiple sclerosis, but that the size and location of the something and the fact that there was only one made him think it was unlikely, but he wanted to send me to a neurologist for more tests.

Finally, after a very scary few weeks filled with tears and mourning, the results of my additional tests came back and a diagnosis was made: relapsing multiple sclerosis.

It was good news, in some ways—not an inoperable brain tumor. I was going to live! But, I was going to live with a disease, and not just any disease, an unpredictable, potentially disabling disease with no cure. I was only 24. I thought, "Back the truck up for a second—this isn't part of the plan. I already have narcolepsy—can we at least try to evenly distribute the diseases around the population? I'm a young woman—I'm supposed to be thinking about climbing the corporate ladder and my Saturday night date, not the plaques growing on my brain!" My images of MS were celebrities like Annette Funicello. Lots of people remember Annette Funicello in her bikini on the beach with Frankie Valley, but I remembered her in my Granny's tabloids, labeled by headlines about her "shocking, disabling illness." I felt sympathetic for her at the time, but I didn't understand her illness or my own.

So, I turned to the internet for information, and I fell in love with MSLifeLines.com. There was a real community feel to the site and a support team of registered nurses I could call to talk to. It was the beginning, for me, of finding out that I wasn't alone.

There is no cure for relapsing MS. The point of the treatments available today is simply to slow down the progression of MS. The ugly, harsh reality is that with this disease, you don't have the luxury of time to learn to cope or pull yourself together. You can't wait to get on a disease modifying drug (or DMD), because MS is not going to wait for you.

My doctor and I chose Rebif^® (interferon beta-1a) based on study results that I researched and discussed with my doctor. I haven't had any side effects, but some people experience injection site reactions flu-like symptoms like fever or chills. They often manage these flu-like symptoms by taking an over-the-counter pain or fever reducer before injecting as directed by their doctor. It's always best to talk to your doctor about any side effects and the best ways to manage them.

Beyond needing and getting treatment, having MS can make you feel really alone. We'll say to ourselves: "Nobody can know what I'm going through." Sometimes those feelings still overwhelm me, but that's why finding the MS community—the MS family—has meant so much to me. I hope that everyone living with MS can find this massive world of people living with MS—we're all so different but we know that even with a serious condition like MS, life is always worth living.

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

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