Taking Time for MS Patients
Today's multiple sclerosis treatment benefits from new medications, new technology —and an old virtue called patience.
AN ESTIMATED 1 MILLION AMERICANS have multiple sclerosis (MS), an autoimmune disease in which the immune system causes inflammation that damages nerve fibers and myelin, the fatty substance that surrounds and insulates those nerves. That damage can produce a variety of symptoms, including problems with walking, vision, and bladder and bowel control, chronic pain and fatigue and psychological problems, such as mood swings and depression. But treatment for MS and its troubling symptoms has taken a great leap forward.
More than a decade ago, RWJBarnabas Health, then known as the Saint Barnabas Health Care System, created a special program to care for patients with MS. Over the past year or so, the system has greatly expanded this program, investing in new physicians and state-of-the-art technology embracing a new philosophy that addresses the special needs of patients with this disease. One of these needs is simply the time it takes to treat them optimally.
In September 2017, Andrew Sylvester, M.D., was recruited from a large MS practice in New York City to become the medical director of the Multiple Sclerosis Comprehensive Care Center. “I was very happy in New York and never thought I’d leave, but RWJBarnabas gave me the means to develop the center here with the vision we had there,” he says. “The goal was to bring this MS center to an elite level. I brought with me the principles of care that were successful at my previous job.”
The primary principle of care, he says, is spending enough time with patients. His team allots up to two hours for an initial visit, covering everything from medical history and symptoms to personal beliefs and concerns. “We want to know their kids, their passions, what makes them tick,” Dr. Sylvester says. “We spend enough time to make sure all their needs are met.” They then evaluate the state of their disease with appropriate testing, which typically includes magnetic resonance imaging (MRI) and blood tests. “We want to get a sense of whether their MS is being controlled and what the severity or stage of the disease is so we can devise a proper strategy to treat it,” he says. Then they meet with the patient again—for another 45 to 60 minutes—to review the test results, talk about the state of their disease and cover all the treatment options that may be appropriate for them. That means focusing on the symptoms as well as the disease.
Many other MS centers focus on the disease “but rarely delve into treating the symptoms,” Dr. Sylvester says. “Here we consider symptom management as important as disease management. Symptoms are what affect patients in their daily lives, so they are key.” His team follows each patient closely to fine-tune treatments until symptoms are under control. “For most issues, there are many treatment options,” he says. “We can usually find something that works with no side effects or with insignificant ones.”
A host of recently developed medications now offer MS patients more and better options for both disease control and symptom management. The first wave of MS medications was effective but needed to be injected by the patient, which was difficult for many, says Matthew Tremblay, M.D., Ph.D., an MS specialist who joined Dr. Sylvester’s team earlier this year. (Both doctors are members of Barnabas Health Medical Group.) In the early 2000s, oral medications came on the scene, but they treated only the relapsing form of MS.
“Until about 2017, there were still no treatments for primary progressive MS, which is less common and has a later age of onset,” Dr. Tremblay says. The most recent MS medication was approved for treating both types of MS, with the added benefit of needing to be administered only twice a year. “That has been a game changer,” he says. The next wave of medicines over the coming few years will address repairing neurons in the early stages of the disease, he predicts. By then, people with earlystage MS “may have the opportunity to have normal, active lives until retirement age,” he says.
On the physical therapy front, new computer-aided devices use electrical stimulation to help with walking. “For each phase of your gait, they can determine whether your leg and foot are in correct alignment for that part of the stride, and help prevent tripping and normalize walking without the need for braces,” says the doctor. There are also new medications that increase walking endurance and speed, as well as others to help with bladder function, fatigue, insomnia and other symptoms.
The center has been completely renovated, and new nursing staff has been hired along with Dr. Tremblay. Saint Barnabas Medical Center also invested in a new MRI machine, right downstairs from the MS center. “It is the most modern machine that is commercially available,” Dr. Sylvester says. “Its powerful technology cuts imaging time in half.”
The Multiple Sclerosis Comprehensive Care Center offers the services of other specialists needed to care for MS, including urologists, ophthalmologists, sleep specialists, mental health experts and social workers.
“We offer one-stop shopping for MS care,” Dr. Sylvester says. “You can see your doctor, go down for an MRI, go to PT, maybe see a sleep specialist, all under one roof. We put patients first and ensure that they are satisfied with their care.”