Emily Dewey describes herself as a creator, educator and devoted mother to her 7-year-old daughter, Stella. Even though she lives with multiple sclerosis, her condition isn’t part of her identity.
“In terms of my MS, I feel amazing. I have a few symptoms that come and go, but for the most part MS doesn’t define me,” Dewey said. “It’s not a death sentence. It’s just something you put in your back pocket and carry with you for the rest of your story.”
She first noticed something amiss with her health in early 2007.
“I started getting headaches like never before — a couple that landed me in the ER,” Dewey said. “One day I was teaching, reading ‘Night’ by Elie Wiesel aloud to my students, and I began to see flashing in my left eye until it blacked out.”
MS is a disease of the central nervous system in which the immune system attacks myelin, the covering around nerves cells in the brain and spinal cord. As damage occurs to different parts of the nervous system, a range of physical and mental symptoms arise, like changes in sensation and vision loss or blurring.
After experiencing that temporary vision loss, Dewey began seeking answers about her strange symptoms. Doctors believed ocular migraines were to blame, but an MRI revealed a brain lesion, which is characteristic of MS. In people with MS, the immune system attacks the protective covering around the nerves of the central nervous system, which leads to telltale lesions scarring the brain tissue.
Dewey decided a second opinion was in order, and made an appointment with the Comprehensive Multiple Sclerosis Program at UF Health Jacksonville.
“She came to me with a classic migraine,” said Scott Silliman, MD, a neurologist who specializes in multiple sclerosis diagnosis and management at the UF Health Neuroscience Institute – Jacksonville. “She came with an MRI in hand and it kind of showed features of MS, but she had never declared it clinically.”
Pregnancy halted the progression of Dewey’s MS, which has been known to happen in some patients. More lesions developed after her daughter’s birth, but still without clear clinical symptoms. Dewey and Silliman investigated other possible diagnoses until her MS emerged in full force during a high-stress period of her life.
“In an 18-month span, I developed multiple symptoms. My headaches became increasingly more frequent,” Dewey said. “I developed tingling up and down my left side that was almost constant, dizziness, and tingling and numbness in the right shoulder area of my back. That’s what really contributed to, as Dr. Silliman says, MS ‘declaring itself’ inside my body. I was diagnosed Oct. 3, 2012.”
Dewey left that day with a diagnosis, but no medication. She was considering having another child in the future, and some MS treatments affect reproduction. Less than a month later, she began experiencing vertigo, and knew it was time to start medication.
“I was given one drug, Gilenya, and it was the first drug that was oral,” she said. While at first the medication seemed scary to Dewey — it causes a drop in heart rate, and the first dose must be administered in a hospital setting — it became apparent it was the perfect fit.
“I have the most common type of MS, relapse-remitting, which means that I have periods of exacerbation where I will feel some of my symptoms and then they quickly pass,” she said. “Stress almost always is the reason for these flare-ups. But for the most part, my MS has been in remission since I started taking Gilenya in November of 2012.”
Today, at age 39, Dewey’s MS is under control. It has not progressed since she began treatment, and she doesn’t experience any side effects from her medication. She has had checkups with Silliman every six months since 2009. At her last visit, she was deemed well enough to extend them to nine months apart.
“Neurologically, she’s done very well,” Silliman said. “She’s a great example of somebody where we caught it before it became too symptomatic. With MS, earlier treatment is better.”
For Dewey, the neurology providers at UF Health Jacksonville have become a bit of a second family after years of providing her with compassionate care.
“Everyone in that office has made me feel welcome, appreciated and important. It’s like a family,” she said. “And Dr. Silliman cares. He always asks about things. We joke and we have such a great relationship. That makes all the difference in the world. And I love that UF Health is a teaching facility — I’m working with the best, and the best who want to make other people better in the field.”
Dewey is an educator for Florida Virtual School, which provides a flexible schedule for doctors’ appointments and managing her health. Moving forward with MS, she plans to keep creating, both through writing and her newest hobby of refinishing old furniture. Most importantly, she focuses on being positive and healthy, both for herself and for her daughter.
“Even if my disease takes a turn for the worse, I know I still have the opportunity to live my life to the fullest,” Dewey said. “Being a single parent and working full time, even when I don’t feel great, I still have to keep doing things that are challenging. My daughter gives me a reason not to use MS as an excuse, and we overcome those challenges together.”
For more information about the Comprehensive Multiple Sclerosis Program at the UF Health Neuroscience Institute, call 904-244-0411 or visit UFHealthJax.org/neurology/multiple-sclerosis.