Multiple sclerosis (MS), an autoimmune disease characterized by demyelination and axonal damage in the central nervous system (CNS), has had itsrates steadily increase over the past several decades, with approximately 58 cases per 100,000 persons in 1975 rising to 309.2 cases per 100,000 persons from 2010-2019.1 These rates were even higher in women and the highest among Black people. Many in the field believe that the increase in incidence is explained by a greater awareness of the disease, improvements in MRI, and increased sensitivity of diagnostic criteria, among other factors.
"I almost wonder, is it really an increased incidence? Or are we finally recognizing it? Are we finally diagnosing it. I find that there’s many patients who, when we dig back into their history, had their first symptom many years ago," Amy Yu, MD, director of the Multiple Sclerosis and Neuroimmunology program at Marcus Neuroscience Institute, a part of Baptist Health, told NeurologyLive®.
Marcus Neuroscience Institute, established at Boca Raton Regional Hospital, has been a leader in neurological research and advanced therapies for years, bringing a personalized approach to treatment. As the diagnostic approaches and therapeutic strategies for patients with MS evolve, the center has managed to adapt to the current climate and maintain optimal care.
It starts with an accurate diagnosis. Misdiagnosis of MS remains a problem in contemporary clinical practice, with some case reports and recent publications from specialized MS centers reporting an estimated 30% of originally referred cases for MS finally receiving diagnoses of other diseases.2 Diagnosis of MS can be difficult, as it requires the key criteria of dissemination in space and time. A wide range of conditions can be mistaken for MS, including migraine; neuromyelitis optica spectrum disorders; as well as uncommon inflammatory, infectious, and metabolic conditions.
Although the 2017 McDonald’s criteria has certainly advanced the diagnostic approach to MS, its application has opened the door for additional challenges. A main cause of the misdiagnosis of MS stemmed from the use of such criteria in syndromes atypical for demyelination or lacking objective clinical findings consistent with MS, and the misinterpretation of or overreliance on MRI abnormalities in the setting of nonspecific neurologic symptoms.3 Many in the field are anticipating a new update to the McDonald criteria to come later this year, hopefully providing even more clarity on the diagnosis of MS and its look-alike mimics.
Yu, a board-certified neurologist, stressed the importance of the noted differences between these autoimmune conditions. "It makes a big difference for a patient. You don’t want to be on the wrong medications," she said. “How we get to that [correct diagnosis] is [through] a very thorough history taking, exploring the prior neurological events or clinical events that are consistent with the demyelinating disease. Perhaps, are there other contributors or other red herrings such as a long-standing history of migraines that were uncontrolled? Or smoking or other cardiovascular disease we should be aware of."
A Multidisciplinary Approach to Treating MS
With 24 FDA-approved treatments for MS, individual therapy is chosen based on several different variables, including the therapy’s distinct mechanisms and potential adverse effects. Although newer disease-modifying therapies (DMTs) have become increasingly more effective in reducing MS relapses, they are multifaceted and have safety profiles that require meticulous monitoring.
Several of these therapies are infusion-based, which can make dosing tricky for certain patients. Having the technology, space, and capabilities to safely administer these new DMTs is critical towards effective patient care, says Thomas Hammond, MD. The Marcus Neuroscience Institute “itself is almost brand new. We have a new infusion center in the back of the hallway on the Institute’s first ground floor of the building. Infusions are becoming a crucial part of treatment of this disease. To make it comfortable and convenient for the patient, instead of having to go way out of their way, is big. They have everything in the same place,” he explained.
Hammond, an associate professor at Florida Atlantic University, added that there’s a dedicated research nurse and several others that are involved in the research program, which may ultimately open the door for research into new MS drugs as they’re in development.
In the near future, Marcus Neuroscience Institute is looking to expand its involvement in the MS research field. "We have a research officer, research coordinators, I think we’re just getting our last bits of infrastructure up," Yu said. "[Once we’re squared away] we can begin to offer clinical trials for patients. I would emphasize that it’s not going to be just any trial, but a clinical trial that’s meaningful, that has good promise, and is not going to be harmful to patients in any way. Not all clinical trials are made the same, and it’s important that we choose the right type of trial to participate in."
The care of MS incorporates several different aspects besides administration of the DMT. Institutions must be equipped with proper MRI machines, optical coherence tomography, and immunological and antibody tests. Symptomatic therapy has become more extensive, involving a wide range of treatments for spasticity, bladder, bowel and sexual disturbances, pain, fatigue, and cognitive impairment.4
Both patients with relapsing and progressive forms of MS benefit from a multidisciplinary approach, with an MS neurologist and MS specialist nurse as the key persons in the management team. Yu stressed having healthy discussions with a patient about the issues they’re encountering can lead to the right types of approaches to truly curb disease progression.
"Is there urinary urgency, do they need to be connected to a urologist, or someone who’s knowledgeable on how to treat their MS bladder? Are there certain medications that can be useful? Or is it as simple as mild lifestyle modifications, timing of when you drink fluids, and so forth," she posited. "Sometimes we might incorporate working with a pelvic floor physical therapist, which we have here at Marcus. All these things make a difference in a patient’s day-to-day life."
In addition to urologists, patients may potentially see a plethora of different specialists, including occupational and physical therapists, psychologists, neuropsychologists, rehabilitation physicians, social workers, and dietitians. Several of these specialists have been ingrained in the multidisciplinary care of MS for decades, whereas roles like social workers, mental health experts, and neuropsychologists have gained more prominence in the last decade.
Nutrition and dieting have become widely researched topics in the MS field, with evidence to show that diet may influence MS onset, course, and quality of life. Additionally, diet affects the composition of the gut microbiome, which in turn has important effects on the immune system that may be relevant for MS.5 There are several different proven diets, including low-fat, Mediterranean, ketogenic, anti-inflammatory, Paleolithic, fasting, and caloric restriction.
Maintaining a healthy lifestyle and consistent physical activity is critical for patients with MS. “If we can get people to exercise on a regular basis, their brain and nervous system is [then] pushing up these growth factors, which keep things healthy and helps prevent the MS relapses and attacks,” Hammond added. "Making sure that they don’t gain too much weight, as obesity is tied with this disease to some extent."
Continued Care Capabilities at Marcus
Marcus Neuroscience Institute has been equipped with a complementary team of physicians to care for patients with MS. There are an array of different nurses, including infusion nurses and triage nurses, that offer help, in addition to a nurse practitioner. The institute also has an in-house specialty pharmacy and a clinical pharmacist that is on-site at times to provide drug education and to answer questions about medications. A unique aspect of the center is the patient navigator, who helps patients connect themselves to resources and guides them through the typically complex healthcare system.
"There are so many different systems, doctors, organizations that sometimes don’t all talk to each other," Yu told NeurologyLive. "A patient navigator is very helpful in making sure that as we’re connecting the patient to these different services, that everyone’s all speaking to each other, that we’re able to get the imaging that we need or see the specialist that we need at an appropriate time."
The Marcus Neuroscience Institute works closely with the Gloria Drummond Physical Rehabilitation Institute, located across the street. That building is home to several neuro-trained physical therapists with specialty training in MS, along with occupational therapists and pelvic floor physical therapists. Over the coming months, the institute will be one of the first in the US to implement the ExoBand, a device that helps individuals with impaired motor skills walk more efficiently.
The ExoBand is a walking brace consisting of a belt and 2 leg loops. These 3 independent elements are connected to each other by a mechanism that stores the energy generated in the first phase of the gait cycle to return it in the second phase, thus enhancing the thrust of the hip flexors and consequently leading to a functional improvement in walking.6 In a 2022 study of patients with neurological disorders impacted by gait function, results showed that participants walked a significantly longer distance in the last session of training with the ExoBand than the first (453.1m [±178.8] vs 392.4 m [±135.1], respectively).7
Locally, Marcus Neuroscience Institute works closely with physicians at Boca Raton Regional Hospital, who have several subspecialists, including a urogynecologist. "It’s very important for patients with MS. Sometimes it’s not just urologists, but someone who understands and is passionate about urodynamics, which is really what the problem is with MS, and sometimes NMO and MOGAD" Yu added.
Urogynecology is a subspecialty within OB-GYN that focuses on treating pelvic floor disorders with gynecologic therapies and surgery. Sex influences multiple aspects of MS, including incidence, expression, activity, prognosis, comorbidities, and outcomes.8 It is believed that understanding sex-based differences will provide important insights into MS pathophysiology and treatment.
To have someone that crosses from both urology and gynecology is critical for this patient population. Bladder dysfunction, which occurs in at least 80% of individuals with MS, happens when MS lesions block or delay transmission of nerve signals in areas of the central nervous system that control the bladder and urinary sphincters.9 Patients may experience frequency and/or urgency of urination, hesitancy to start urinating, frequent nighttime urination, incontinence, and an inability to empty the bladder completely.
As previously mentioned, the Marcus Neuroscience Institute is a part of Baptist Health, the largest healthcare organization in the region. Baptist encompasses 12 hospitals with more than 27,000 employees and 200 outpatient centers, urgent care facilities, and physician practices across the Miami-Dade, Monroe, Broward, and Palm Beach counties.
In addition to caring for patients with MS, the Marcus Neuroscience Institute has clinicians training in all facets of neurology, including stroke, movement disorders, neuro-oncology, epilepsy, memory disorder, and spinal conditions. The 57,000-square-foot facility houses a 20-bed neuro intensive care and step-down unit, 4 dedicated operating rooms—including 1 equipped with intraoperative MRI and 2 with intraoperative CT capability—and a biplane angiography suite. Patients also benefit from the institute’s synergistic relationship with Boca Regional’s Eugene M. & Christine E. Lynn Cancer Institute, offering patients with neurologic malignancies that most advanced radiation and medical oncology therapies available.10
"A big component is we care. I care. All the staff, the other providers, allied health, we all care deeply. There’s a lot of respect and care that goes into what we do every day," Yu stressed. "There’s a strong commitment from Marcus Neuroscience and also Baptist Health to invest in this program, to build and support it, because we want to be the place in South Florida that patient know they can turn to and receive care with dignity, and respect, as well as feel like they’re listened to and make sure they’re getting an accurate diagnosis. It’s the people [here]."