By Judy O’Gorman Alvarez
Nearly 1 million people are living with multiple sclerosis (MS) in the U.S., according to a study funded by the National MS Society. This is more than twice some earlier estimates. A discrepancy so drastic may be all the more reason awareness and education is needed when dealing with the disease. So perhaps it’s fitting that March is considered Multiple Sclerosis Awareness month.
The National MS Society describes multiple sclerosis as an unpredictable disease of the central nervous system. It disrupts the flow of information within the brain, and between the brain and body. Although the cause of MS is still unknown, scientists believe that a combination of environmental and genetic factors contribute to the risk of developing the disease.
At first glance one might think cases of MS are increasing but it’s more likely more cases are being diagnosed. “There are probably about 150 to 200 cases diagnosed a week,” said David B. Duncan, M.D., director of the Multiple Sclerosis Center at Hackensack Meridian Health Jersey Shore University Medical Center.
The updated numbers may be caused by improved awareness, more calls for MRI testing and sometimes people paying more attention to ongoing symptoms. “It’s a combination of technology and awareness,” said Duncan.
Duncan, an MS-certified specialist, had been treating MS for more than 25 years before he joined the newly created center at Jersey Shore in 2019. “We saw a need for the community here for a comprehensive MS center,” he said.
The MS center’s integrated and multidisciplinary clinical team, part of Hackensack Meridian Health’s Neuroscience Institute, provides patients with comprehensive care to improve symptoms, optimizing their ability to function in their professional and personal lives, reduce pain and improve quality of life, according to its website.
Treatment for MS patients has changed greatly over the years.
“When I was in medical school in the 1980s there was only symptomatic therapy,” Duncan said. “If you had an acute neurological impairment, we’d give them a course of steroids.”
Although there’s no cure for MS, “that’s all we could offer.”
According to Duncan, the 1990s brought about the first therapies: platform drugs, “injectables that could change the course of the disease. Maybe it would not get as bad as quickly or slow down its progression.”
“MS is an inflammatory disease,” he explained. Treatment may include immunosuppressants that suppresses the body’s immune system and immunomodulators that modify the activity of the immune system, in turn, decreasing the inflammatory response.
The progress, severity and specific symptoms of MS in any one person cannot yet be predicted. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease.
The two main markers physicians look for in MS patients are lesions on the brain and the progression of disabilities. In previous years, success was measured by slowing down the disease. Now goals are higher. “We don’t want to have any disease progression,” Duncan said.
“Today there are 18 therapies on the market that can slow down the process,” he said. “And we can really put the disease in remission or slow its progression.”
Duncan suggests other factors can aid in the well-being of patients afflicted with MS. “That includes nutrition, diet, exercise and supplements,” he said, “and the importance of vitamin D at appropriate levels. We suggest an organic, Mediterranean diet.”
“And avoid smoking,” he added.
An early diagnosis, of course, is the best scenario for those afflicted with MS. “When diagnosis occurs later, therapies are less effective,” he said.
Some diagnoses are missed or delayed because symptoms were misunderstood. Patients may have been told the symptoms were psychiatric-related. “They’re under a lot of stress,” Duncan said. “Or they’ve been told it’s their anxiety or depression causing symptoms.”
He cites patients who have had blurry vision or what was thought to be a pinched nerve, but when a full history was taken, symptoms reviewed and testing is done, it turned out to be MS.
“I do a lot of programs where I talk to physicians about the hallmarks of MS,” he said. “If you’re a young person – 20 to 50 – and having neurological symptoms, you should see a neurologist.”
When Sara Baye of Ocean Township overdid some yard work in 2019 when she was 32, she thought she may have a slipped disk. She slowly became paralyzed over a two-week period. “I thought I needed to make an appointment with a chiropractor,” she said. “And then the paralysis left as soon as it came.”
But her sister, a physician, told her to consult a neurologist. After testing and consultations, she wound up at the Jersey Shore MS center.
Baye said she discounted what must have been earlier symptoms of MS, such as tingling and “itchy” feelings. “And even before I was paralyzed, my arms were weak and I didn’t know it. I was drinking my cup of coffee with two hands.”
The MS diagnosis was overwhelming for Baye, her husband and family. As a mother of two boys – 2 and 3 years old at the time – and with a full-time job as a buyer for the U.S. Navy in Lakehurst, she wasn’t sure what to expect.
“I was scared,” she said. In addition to treatment, she found the Jersey Shore MS center’s support group offered encouragement. “At the first group I was still crying about it. I was still crushed. One gentleman said, ‘If you lost someone, you’d be going through the same grief. The person you’re losing is yourself.’ ”
He told her to look up the stages of grief: denial, anger, bargaining, depression and acceptance. “It’s OK to view this as a loss,” she learned. “It’s a loss of what you pictured for your future.”
Instead, Baye said, she set about envisioning a new future.
Now Baye appreciates the guest speakers who have come to the support group meetings: a physical therapist spoke about exercises that can help; a speech therapist talked about feeding and possible difficulties swallowing. And through the group she has met the newly diagnosed, those living with MS for years and even a woman using a wheelchair who is in a clinical trial for stem cell treatment. And she gained a good dose of optimism.
Since she’s been under Duncan’s care at Jersey Shore, Baye was happy to learn that her MRIs have shown improvement. “Going into this diagnosis I knew all I could hope for was to stay stable,” she said.
In the meantime, Baye is eating well, exercising to stay strong and plans to take on the roles of soccer and basketball coach for her sons. Immediately after her diagnosis she thought she’d have to discard those plans. “Now I’m back to saying I can do that.”
The National MS Society will hold its Walk MS: Asbury Park April 24. For more information, visit natioanlmssociety.org.
The article originally appeared in the March 4 – 10, 2021 print edition of The Two River Times.
