I was diagnosed in the most bizarre way possible. I went to the doctor because my ear hurt so much I had trouble falling asleep, and I figured I must have had an ear infection. The doctor looked at my ear and said, “No, there’s no ear infection, but there’s some wax in there. Let’s have the nurse clean it out.” So she cleaned my ear — and ruptured my eardrum. From there everything spiraled downhill. Over the next few days I started having pain in my jaw. The doctor thought I was crazy — how could my jaw hurt from my eardrum being ruptured? The pain got progressively worse. Everything was on one side of my body. One of my eyes was droopy, and the numbness spread down my body — down my neck, down my arm. By the time it got down to my thigh, I was scared. Something was taking over my body, and I didn’t know what it was. I kept looking up “stroke” on the Internet. My doctor put me in the hospital so she could do tests and get quick results. They did an MRI and a spinal tap and blood work. They found lesions on my brain and on my spine, and I was diagnosed with MS. I was shocked. I have an aunt with MS, but it was never on my radar. I have relapsing and remitting MS. The disease can be dormant and then all of a sudden flare after stress or injury.
Finding the Right MS Doctor
My primary care physician referred me to a doctor at an affiliated hospital. After waiting a month for an appointment, that first doctor’s visit was awful. He gave me binders full of drug information and didn’t answer any of my questions. I left the hospital in tears. I had encountered four different people who had the exact same story. One person, a nurse who took care of me in the hospital, told me how he had gone to four different neurologists and ended up with one he loves. I finally made it to that doctor, and the people I talked to were absolutely right.
Getting Involved and Staying Active
Since getting my initial symptoms under control, I’ve been doing amazingly well. I started getting involved with the MS Society, doing bike rides and mentoring the newly diagnosed through a program called MS Active Voices. I feel good that I’m helping them out and letting them know that this isn’t that bad and life will go on. I don’t think about the disease when I think about the future. I am so busy running around with my kids all the time. My daughter (11) does travel soccer and my son (13) does travel hockey and lacrosse. If you are going to get MS, this is the best time to get it. My doctor said to me several years ago that he thought there’d be a cure in the next five years. I just keep that in the back of my mind, and it gives me hope. I also play hockey, which I never thought I would do. The hockey moms thought it would be fun to learn to play. I was just getting going and learning to skate when I was diagnosed. I took a break from it, and I could have given up since I wasn’t really into it anyway, but I made a decision that MS was not going to beat me and destroy me. Now I love hockey so much, it’s almost a drug. I finally understand why my son loves it so much. Because of my diagnosis, I’ve developed this determination — nothing’s going to stop me. MS is not going to break my stride. Emily Guathier lives in Sterling Heights, Michigan with her husband and two kids. She runs a small business out of her home called “Let’s hear it for Spirit.” She is currently serving on the Bike MS committee of the Michigan chapter of the MS Society. Amanda Keener is a freelance science writer. She’s getting her PhD in microbiology and immunology and writes the blog ImmYOUnology. Read more stories of struggle, strength, and survival on Everyday Health’s My Health Story column. Photo Credit: Michael Dore
