Melanie


I first experienced MS symptoms in February 2001. I was about to leave a job I wasn't enjoying to return to my old employer. I was very excited to be going back, and felt like I was starting a new chapter in my life. It turned out I was, but it was a very different chapter than what I had expected.

I took a week off between the two jobs and went to New York for a few days to visit friends. While there I got extremely tired and felt a strange tingling in my chest. I chalked the tiredness up to the late night out and the tingling to my backpack.

I returned home and noticed a few days later that my left side was numb. I thought I had a pinched nerve and went to an aerobics class to "shake it loose." Surprise, surprise, that didn't work. I made an appointment with my doctor, who ordered an MRI. In the meantime I had been searching the internet for potential causes of random numbness and fatigue and MS was the only thing that seemed plausible. So, though not really surprised when the call came confirming my diagnosis, I was still devastated. Even so, I have always felt fortunate to have been diagnosed so quickly after the first appearance of my symptoms; I know that is often not the case.

My first exacerbation was very difficult--not only the numbness, pain and fatigue but also the side effects from the steroids they put me on and dealing with taking Avonex, getting MRIs, lumbar puncture, etc. I learned very quickly that I really am my own best advocate, and I can't just expect my doctors to handle everything.

I have come a long way since that terrifying day when I was diagnosed. I take Rebif three times a week and am generally doing well. I've had one exacerbation since my first, and for the most part my symptoms do not interfere with my life. Almost four years after being diagnosed, MS is just now part of my life, something that I have accepted and deal with. I am aware that MS may throw me a huge curve ball in the future, but have decided not to dwell on it.

I guess the most important lessons I learned when I was diagnosed were not necessarily physical but emotional. Many people's reactions to my diagnosis added to my discomfort, confusion and fear. This disease is still widely misunderstood, and people have their own notions about what it means that are likely very different than yours. It was important for me to identify those people in my life who truly understood, and lean on them, and take some time for myself. The time of diagnosis is a good time to be selfish--don't feel guilty about taking care of yourself.

I no longer spend any time wishing I didn't have this disease, as my life is full and rich even with it. I also feel like being diagnosed with MS helped make me a more compassionate, empathetic and humble person.