Multiple Sclerosis: Not the End of Your Dreams
Real People, Real MS Stories
I woke up one Sunday morning and was seeing double. I called my father, a pediatrician, and he told me to get an MRI immediately. There’s a pretty short list of things that cause double vision, and whether it’s a brain tumor, some neurological disease, or multiple sclerosis (MS), you want to catch it quickly. The MRI was inconclusive, but it suggested that I had MS. I then underwent a spinal tap and tested positive for MS. I was diagnosed within a week of my first symptoms, which is unheard of. I got lucky.
I didn’t feel so lucky. I was frightened that having MS would mean that I lost the ability to live out my life dreams. Top on my bucket list was having kids; now my greatest fear was that I wouldn’t be able to have kids or care for them.
My path to finding the right treatment was a roller coaster. I tried two different injectables in three years and neither of them really worked. I was getting worse, having relapses every three months with various symptoms knocking me on my butt. My MRIs were showing more and more lesions on my brain. I couldn’t get rid of the double vision, the nerve pain, and the muscle spasms. The fatigue made me feel like someone put a fur coat on me, dropped me in a pool of molasses, and told me to swim. Finally, in 2009, I experienced a really bad relapse that numbed my body from the waist down and completely paralyzed my left arm.
I made the best of the situation. I bought a cane because my balance was so off. I couldn’t feel the ground I was walking on. I was only 30 years old and couldn’t picture myself hobbling around like an old lady, so I bought the coolest cane I could find. It had flames coming out from the bottom, just like Dr. Gregory House’s (from the TV show “House”), so of course, I named my cane Greg. For six months, Greg was my best friend. Everyone knew him: my doctors, my physical therapists, my friends, my family. Greg became a family member. But I began losing feeling in my right arm, and I wasn’t ready to lose both my arms. I decided, after much planning and researching, to go on a drug that’s used for people who have failed on previous treatments. It’s a last line of defense drug because there’s a small risk of contracting a fatal brain infection while on it. But I didn’t want to live half a life, so we tried the drug. In six months, I was pretty much functioning fully. Something was finally working.
That winter, I told my husband that I was going to go to Christmas dinner—without Greg. I walked into my mom’s house and for a minute, no one noticed any difference. All of the sudden, a cousin asked, “Where’s Greg? Did you forget Greg?” So I made a little announcement, explaining, “Everyone, Greg and I have sort of broken up.” My 80-year-old grandmother immediately replied, “Oh, thank the lord, honey. I never really liked him anyway.” Breaking up with Greg was a wonderful Christmas present.
Finally, I was stable. I wasn’t developing new lesions on my brain, I wasn’t relapsing and I wasn’t having any crazy symptoms—just the normal, everyday MS aches and pains. And since I was feeling in control of my disease, my mind went back to starting a family. My husband and I talked to every doctor under the sun: high-risk perinatologists, high-risk OB/GYNs, neurologists, and even pediatricians. My doctors wanted me to be stable for a year before I tried to get pregnant, just so my body would have time to heal. Since the MS caused inflamed brain lesions, my body was constantly trying to manage them; we were worried what would happen if I tried to get pregnant on top of that. I spent that year just gathering information.
We determined that I’d have to end the infusion treatments, since the baby could be harmed by its effects. But my MS was so aggressive that I was terrified of what would happen without the drug. What if my MS went haywire and I couldn’t treat it? Would I end up a new mom in a wheelchair? We finally decided that I would stay on the infusions while we tried to get pregnant and we’d stop the therapy as soon as we found out we were pregnant. This way, the baby would only be exposed to the drug for its first couple of weeks, and I’d be getting treated for as long as possible. Fortunately, I came across a study that showed that pregnant women (and their children) who were exposed to the infusions in the first month experienced no abnormal effects. Our decision was made and it timed out beautifully. I had my last infusion therapy on April 1 and I found out I was pregnant at the end of April, right before my next infusion.
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