Coping with an MS diagnosis
By Jessica Levco
Angie Rose Randall was fresh off her wedding in 2014 when she woke up one morning and couldn’t see out of her right eye. The 29-year-old knew that something was wrong.
She saw several doctors, pushed for answers, but all she got was: “wait it out” or “put a warm compress on your eye.” A few days later, she woke up and couldn’t feel her body — it was all numb.
Within a week, she got the results back from an MRI. The results shook her soul. She was diagnosed with relapsing-remitting multiple sclerosis.
“I was hysterically crying,” Randall says, a Wicker Park resident. “I thought that life as I knew it was over — and to some degree, it was. But I’m an action-oriented person. After a few days of wallowing, I started researching neurologists, called my insurance and figured out what I could do to control the situation.”
She would soon learn that MS, an autoimmune disease that affects more than 2.3 million people, isn’t an easy disease to “control.” For people with MS, the immune system attacks the central nervous system — without warning and unpredictably. Stiffness, fatigue, dizziness, numbness, along with difficulty walking and seeing are common areas where the disease can cause damage.
Nobody knows what causes MS (some doctors think it could be genetics), but it’s more common in women than in men. Most diagnoses happen between ages of 20 and 50. As of now, there is no cure.
A life-changing care team
Randall met with several neurologists, but said it was a complete relief to find neurologist Dusan Stefoski, MD. As a leader in the MS field, he developed the tablet drug, Ampyra. This medication can improve damaged nerve function — for example, it helps patients walk with greater control.
“I credit him will all the success I’ve had,” Randall says. “He is my saving grace. Ever since I’ve met him, he’s put a lot of my anxiety and stress at ease. There was so much darkness after the diagnosis. I was scared. I didn’t know what to expect and I feared the worst.”
Randall says he was the only neurologist she met who made her feel like she was going to be OK and that she could still have the life she hoped for. He gave her the reassurance and comfort she needed when she was frightened about what the future held for her.
Before her diagnosis, Randall and her husband planned on having a family. But several doctors urged her not to pursue childbirth immediately and instead, to start a medication. Dr. Stefoski had the opposite reaction.
“He came up with a plan to help me have children while taking my safety with MS into consideration,” Rose Randall says. “The life I wanted was not over, but would change. I had to modify my life to manage the disease.”
She credits Dr. Stefoski for helping her achieve the family she always wanted — she now has a 4-year-old daughter and a 9-month old son. She also credits him for helping her create a new lifestyle to help manage the disease. Being proactive about her medical appointments, sleeping, exercising and eating healthy are her priorities.
Sharing a story of hope
The past five years have been filled with ups and downs. She’s had two relapses. But she has also been able to manage the disease well with the help of 12 infusions a year of Tysbari, a medication that helps control her MS symptoms. She schedules several lab tests and MRIs each year to make sure the drug is working. Her family recently celebrated her clean bill of health in late 2019 when her latest MRI showed no new lesions.
She’s also taken an advocacy role in the MS community to help bring comfort, support and strength to others newly diagnosed with the disease. Since her diagnosis, she’s joined the Woman’s Board at Rush University Medical Center, created a lifestyle blog about MS and started an Instagram account (with more than 10,000 followers) to help spread her message.
Since her diagnosis five years ago, she raised $110,000 for the National Multiple Sclerosis Society to support their research, advancements and efforts to find a cure. She also serves as a spokesperson for the society. As a spokesperson, she wants to help change the negative perception of what it means to have MS — and share her story of hope.
“I want to share my experiences to bring hope to those who are diagnosed at a young age,” Randall says. “I want to show people you can lead a very fulfilling and active life with MS, given you take control of your health, find the right doctor, the right medication and learn how to manage stress levels. You cannot control the fact that you have MS, but you can control your reaction to it.”