For 35-year-old Kristin Taylor, a diagnosis of relapsing-remitting multiple sclerosis came early in life. Her first two flare-ups of the disease, in high school and college, were chalked up to other causes. When the third flare-up struck in her 20s — numbness and tingling in her left arm — a neurologist diagnosed her with MS. Taylor felt scared and overwhelmed. “I had no idea what MS was. I didn’t know what it meant for my future, or if I was going to die in 10 years. It was terrifying,” she remembers.
Taylor is among the many people diagnosed early in life with MS, a progressive, incurable disease that damages the brain, spinal cord and optic nerves. “Most people are diagnosed between ages 20 and 40,” says Dr. Mary Rensel, director of health, wellness and MS at the Cleveland Clinic’s Mellen Center for Multiple Sclerosis. She notes that between 300,000 to 450,000 people in the U.S. have MS, and 5 percent are younger than 18 at onset. “For girls, the numbers are increasing for onset under 18,” Rensel says.
Life Expectancy for Those Diagnosed Young
MS isn’t a terminal illness. There are now more than a dozen drugs to manage symptoms, including one called Ocrevus (ocrelizumab), which was approved by the Food and Drug Administration in late March 2017. “The average life expectancy for someone diagnosed today is the same as it is for everyone else. But it depends on the severity of the disease. Past studies have suggested that life expectancy was reduced by about seven years for those with severe MS. With the advent of earlier diagnosis and treatment, recent data suggests that these reductions in life expectancy may be disappearing,” says Dr. Ben Thrower, medical director of the Multiple Sclerosis Institute at Shepherd Center in Atlanta.
For example, authors of a 2015 study published in the Journal of Neuroscience Nursing write that the vast majority (90 percent) of people with MS in their 20s now may live into their 70s, and about 25 percent of people with MS are older than 65. The average life expectancy for anyone in the U.S. is 78, according to the Centers for Disease Control and Prevention.
[See: 11 Simple, Proven Ways to Optimize Your Mental Health.]
Knowing that MS isn’t a death sentence is enough for Taylor. “When my doctor told me that I’d die of something else one day, I suddenly felt this was manageable. It changed my outlook on everything and took away some of the fear,” she recalls.
Young and Managing MS
Living with MS is challenging at any age. The National Multiple Sclerosis Society reports that common symptoms include fatigue, trouble walking, weakness, vision problems, dizziness and vertigo, bladder and bowel problems, difficulty processing and remembering new information, sexual dysfunction, pain and depression.
Those symptoms can have a dramatic impact on otherwise active young teens and adults. “A lot of times it gets in the way of relationships, work, school and family life,” Rensel says.
Young people with MS may have to consider how they’ll be affected when it comes to:
— School: Thrower says 60 percent of people with MS experience changes in thinking skills. Students may need more time to do their work. Also, bladder or bowel issues may require them to go to the bathroom frequently. “Often we have to explain to schools that this is real, and here’s how to support the student,” Rensel adds.
— Work: MS-related fatigue can affect job performance. “If you’re one of those who needs a two-hour nap in the middle of the day, there aren’t many jobs that accommodate that,” Thrower says.
— Driving: “Most people with MS can continue driving. But if you have weakness in your leg and can’t operate the gas or brake, we may send you for an evaluation and set you up with hand controls. You may have to stop driving if you have slowed reaction times,” Thrower says.
— Dating: “Young, healthy adults doing well with MS are often afraid to disclose that they have the condition,” Thrower explains. MS symptoms can throw a wrench into relationships (think: depression or problems with bladder, bowel or sexual function). Thrower says those can be treated with medication and lifestyle changes.
Tips to Cope
It may feel overwhelming to manage MS, so it’s important to have a supportive team in place. Rensel recommends assembling caregivers as well as a physician, nurse, social worker, psychologist and a liaison (to go between you and your school or employer). Together, you can work to actively address MS and its many impacts on your life.
[See: How Social Workers Help Your Health.]
The following tips may also help:
Exercise. “Studies have shown people with MS in a regular exercise program can typically have better energy levels. But don’t get locked into rigid exercise goals. You’ll have good days and bad days. Stay in a routine and don’t quit,” Thrower says.
Don’t smoke, or quit if you do. Smoking can worsen MS, according to the National Multiple Sclerosis Society.
Eat a healthy diet. Thrower says there isn’t a diet that’s been proven to change the course of MS. He recommends following a diet to reduce the risk of heart disease and stroke. The Mayo Clinic notes the Mediterranean diet is associated with a reduced risk for developing cardiovascular disease.
Don’t restrict activity. “We had someone skydive recently. Someone else is trying to run a marathon in every state. We say try it, remain safe and see how you feel. If you’re exhausted, maybe do less of it next time,” Rensel says.
Maintain a healthy body weight. Thrower notes that being overweight may add to MS-related mobility problems.
[See: U.S. News’ 38 Best Diets Overall.]
Get more sleep. The National Sleep Foundation suggests MS is associated with numerous sleep disorders, such as insomnia and narcolepsy.
Pay attention to mood. “At least 60 percent of people with MS will deal with symptoms of depression. I ask patients about it at every visit,” Rensel says. She recommends seeing a psychologist who’s trained to work with people with MS, or joining a support group to help you cope.
Can You Still Enjoy Life?
An early MS diagnosis doesn’t mean your life is over before it’s begun, Thrower says. “We have many medications to treat MS. Our goal is to be as aggressive as possible so we don’t have the conversation about what you’ve lost,” he adds.
For Taylor, who is now married with two children and working full time, it’s all about attitude. “I’m glad I found out early that I have MS, and not in my 60s when I couldn’t do more about it,” she says. “It’s made me appreciate the things that I can do, and I try not to take that for granted. My legs might be tired because I walked around Disney all day, but look — I got to walk around Disney all day! Really, I’ve been lucky.”
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How Does an Early MS Diagnosis Impact Quality of Life? originally appeared on usnews.com
