Sturdy’s Multiple Sclerosis (MS) Center Marks 20 Years of Helping Patients Take Control of Their Symptoms
Whether he’s driving himself to the YMCA or his favorite fishing spot, or to bring his daughter to dance lessons, Mike Monroe gets around in a pretty rigged-out ride. Not in the sense of chrome rims or suspension systems—his Jeep Liberty is customized with high-tech adaptive hand controls and a lift for an electric wheelchair.
It’s one of the tools that prevents multiple sclerosis (MS) from getting in Monroe’s way.
“I had to quit my job in the restaurant business, and I can’t play golf like I used to,” says Monroe, “but it doesn’t mean I’m going to take a backseat to life and miss out on it.”
Monroe entrusts his care to Sturdy Memorial Hospital’s MS Center. Since 1995, the Center’s multidisciplinary team of neurologists, physical therapists, certified nurses, social workers, and others has worked together to deliver specialized, comprehensive, and coordinated care and services to people with MS.
“They even went so far as to help me coordinate and find funding for all this adaptive equipment,” says Monroe, which helps him whether he’s at home or on the go.
“Here, patients are at the center of their own care,” says Dr. Tarun Singhal, Board Certified Neurologist and Medical Director of the MS Center, and a physician of Brigham and Women’s Department of Neurology. “We empower them to continue to live with independence and self-sufficiency, providing treatments as well as support to address the complex needs of the disease.”
Monroe, a 48-year-old resident of East Providence, RI, was diagnosed with MS in 2008 and has been going to Sturdy’s MS Center since 2009. It was a minor car accident that led to his diagnosis—the following day, he was limping and felt like he had a pinched nerve.
“It takes a lot to rattle me but this made me nervous,” says Monroe, who went to see his then-primary care physician. Upon looking at Monroe’s off-balanced gait, the doctor sent him for an MRI, which confirmed MS.
MS is an autoimmune disease of the central nervous system that damages areas of the brain and spinal cord. Caused by abnormal activation of the immune system that targets the insulating material around the nerve fibers, the myelin sheath, MS is essentially a disease that disrupts connections within the brain and between the brain and the rest of the body.
Monroe was originally diagnosed with relapsing remitting multiple sclerosis (RRMS), the most common form of multiple sclerosis.
In RRMS, there are discrete “attacks” of MS symptoms lasting from one to several days. “These symptoms include decreased vision in one or both eyes, double vision, numbness, weakness of one or more limbs, imbalance, bladder or bowel dysfunction, spasticity [tightness or spasms], heat and temperature sensitivity, and so on,” says Singhal. “Primary progressive multiple sclerosis (PPMS) and secondary progressive multiple sclerosis (SPMS) are subtypes of MS and share these symptoms, but without distinct flare-ups and periods of recovery.”
“The diagnosis put all the pieces together for me, actually,” says Monroe, whose disease has progressed to SPMS. “For years I’d experienced numbness, but that was also one of the side effects of a cholesterol medication I was taking, so I ignored it. Fatigue, I attributed to working overtime. Feeling weak and wiped out, especially after taking a hot shower, I figured was just dehydration. All these signs I brushed off, and I shouldn’t have.”
According to Patricia Messier, RN, MSN, MSCN, Nurse Coordinator of the MS Center, “The symptoms of MS are often very subtle and can come and then disappear for long periods of time. Young and otherwise healthy people do not always seek medical care until symptoms progress.”
General practitioners or neurologists who might not see MS patients on a regular basis may request evaluation by an MS specialist, like those at Sturdy’s MS Center, to either confirm or deny their suspicions. Diagnosis involves tests such as an MRI or spinal tap (a.k.a. lumbar puncture) along with medical history and neurological exam.
“MS diagnosis via MRI requires the presence of two or more lesions in the central nervous system [brain, spinal cord, and cranial nerves] disseminated in both time and space, meaning more than one clinical episode involving more than one area of the central nervous system,” says Dr. Singhal.
Diagnosis can be tricky, “sometimes requiring further testing and neurological examinations separated by months to assess changes over time,” says Messier.
Erin Anderson is a patient of Dr. Singhal whom he calls a “unique case.” Anderson, a 37-year old resident of Attleboro, has suffered from migraines since adolescence that have intensified since she gave birth to her youngest daughter, now seven. Previous practitioners ruled out an MS diagnosis due to the absence of multiple lesions on MRI scans.
But Dr. Singhal took another look in December 2014 with a new MRI. By examining all scans done over the years concurrently, he identified a growing lesion on Anderson’s brainstem as well as, in the latest MRI, old (inactive) and new (active) lesions in different parts of the brain. His findings and consultations with his colleagues in Boston hospitals supported the diagnosis of RRMS. Plus the brainstem lesion shed light on her years of suffering from migraines, as such lesions have been known to cause higher incidence of migraines in MS patients.
“It’s so reassuring knowing the cause of my migraines and of my other symptoms like fatigue and memory problems,” says Anderson. “For years my doctors told me all my issues were just ‘in my mind’ or that I was depressed. But I had leg numbness and tingling, I was falling a lot, I felt sick all the time and had to quit work [in the retail industry]. I felt hopeless. Now that I know my health issues aren’t just ‘in my head’—well, literally, they are—I can do something about them.”
Anderson is considered a unique case not simply because she had posed a diagnostic dilemma. There have been hurdles to her course of treatment, from insurance coverage issues to her allergic reactions and side effects to steroids and other medications.
“We’re working to overcome these hurdles and address all her symptoms,” says Dr. Singhal. “Treatments will aim to address her problems comprehensively. This will include targeted medications for the underlying MS, headache management, and physical and occupational therapy as needed. We’re working on personalizing appropriate treatments for her. In addition, our social workers and administrative staff are advocating for her case with her health insurer.”
The MS Center referred Anderson to Aquatic Physical Therapy at the Attleboro YMCA, a service provided by Sturdy’s Physical Therapy Department. Physical therapy and exercise help MS patients maintain muscle strength and prevent atrophy as well as reduce spasticity, pain, fatigue, weakness, and other symptoms.
Staying active is important to Anderson—“We’re a pretty outdoorsy family,” she says. “We like hiking the trails in Attleboro, Blue Hills, wherever.” Anderson is also a jewelry-maker and a youth-group volunteer. “While I know I have my husband and kids to help me, I have always been very independent and I don’t want that taken away from me.”
Dr. Ranbir Dhillon, Neurologist, is Monroe’s physician at the MS Center. He prescribed a daily oral medication that targets symptoms and delays disability progression, monthly IV steroid infusions, and recommended that he maintain adequate vitamin D levels. “Current studies indicate that low vitamin D may play a role in disease progression,” says Dr. Dhillon. And he referred Monroe to Sturdy Physical Therapy as well as the Seekonk YMCA, locations equipped with functional electrical stimulation (FES) bicycles. This technology uses electrical current to stimulate peripheral nerves, evoking muscle contractions and assisting him in exercise. “Beginning exercise right away improves function, especially endurance and gait.”
“It takes me longer to get ready every day, but I do it,” says Monroe. “Because the exercise I get in physical therapy has helped improve not only my strength but my mood. Between physical therapy, support groups, coordinating my therapies and equipment—Sturdy has been so thorough and accommodating in helping me stay self-sufficient, and positive.”
According to the National Multiple Sclerosis Society (NMSS), more than 400,000 people have MS in the U.S.; however, this statistic is only a best estimate, as symptoms can be completely invisible and MS prevalence is not consistently tracked by any U.S. government agency. The number could be much higher.
As MS symptoms can be variable and subtle and the disease does not have a “diagnostic” laboratory test, these factors often result in delays to definitive diagnosis. Various studies with biomarkers, which measure a biological process, are helping predict development of MS and improve diagnostics, as well as the effectiveness of treatment clinical trials. Dr. Singhal is one such researcher, and plans to offer certain biomarker studies and clinical trials at Sturdy in the future, to further enhance the MS Center’s diagnostic and therapeutic services.
For 20 years, the MS Center at Sturdy has provided local access to treatments that minimize the progression and impact of MS and improve wellbeing. A multidisciplinary team works together to develop individualized care plans. Treatments include medications, BOTOX® and TYSABRI® for spasticity, Medtronic pump management, and physical, occupational, and speech/language therapy, among other treatments and services.
Anyone who experiences MS symptoms should see a physician for medical evaluation for early diagnosis and timely therapeutic intervention. According to Dr. Dhillon, “Studies show that early treatment can alter the course of the disease and prevent accumulation of disability. People who experience neurological symptoms should see their physician for medical evaluation, for an appropriate referral, early diagnosis, and timely therapeutic intervention.”
For more information about MS symptoms and treatments as well as Sturdy’s MS Center, click here.