Multiple Sclerosis Patient Story
A Gateway to Comprehensive Care
Julia Manning knew something was wrong when, within days, she lost vision in one eye and suffered a miscarriage. Still, the final diagnosis stunned her — at age 30, Julia learned she had multiple sclerosis (MS), an autoimmune disease that affects the central nervous system.
“I was blown over,” she said. “Then you meet the doctors who say you shouldn’t think about getting pregnant, just worry about your health.”
Despite her initial fears, Julia successfully carried four babies, including a set of twins. She went through several neurologists and MS programs before finding a home at Milford Regional Medical Center, where she is a patient of the Center for Multiple Sclerosis and a member of the long-running MS Support Group. The Center is the brainchild of Maria Pilar Elisa T. Dayaw, MD.
“It’s excellent and something that was really needed,” said Julia, now a 37-year-old Hopedale resident. “There are so many patients with MS in the area, and it’s great that they don’t have to drive into Boston or Worcester. You can just feel Dr. Dayaw’s energy. She wants to figure out what’s going on with you and how to treat it.”
Approximately 400,000 Americans have MS, and Dr. Dayaw estimates that it affects about 600 people in the Milford Regional service area. With MS, a tissue called myelin that coats nerve cells and nerve fibers is lost in multiple areas in the brain, spinal cord and cranial nerves, leaving scar tissue known as plaques or lesions. “Myelin is an insulator of the nerves,” said Dr. Dayaw. “If you don’t have insulation in your wiring, the transmission is slower. The nerve fiber can also degenerate and be destroyed.”
According to Dr. Dayaw, the most common type of MS is Relapsing-Remitting, in which people experience clearly defined flare-ups followed by partial or complete recovery periods.
Dr. Dayaw approached Milford Regional’s administration and her fellow neurologists about establishing a MS Center to treat this unique disease and found the support to move forward. “MS symptoms change from person to person,” said Dr. Dayaw. “Not all concerns can be addressed in a 15-20 minute encounter at the doctor’s office. We wanted patients to have access to ancillary services in the context of a MS Center so they know their care is specialized.”
Referred patients are first screened in a neurologist’s office and then evaluated at the MS Center. Over the course of two hours, they are visited and assessed by the MS physician, MS nurse, social worker, dietician, physical therapist and occupational therapist. After the evaluation, referrals might be made for physical therapy, ophthalmology, orthopedics, urology and other services including the visiting nurse association (VNA) and the infusion suite for treatment, said Dr. Dayaw. She noted that a crucial part of the visit is the assessment by Catherine Grimes, BSN, who has MS herself and leads the support group.
“We focus on what is most important to the patients and in having the biggest impact on their lives,” said Catherine. “A good part of what we do is education. For example, if patients are on steroids for flare-ups, we want to make sure they’re taking calcium and Vitamin D, especially men as they don’t think of osteoporosis as being a problem. We give them lists of resources on topics like MS adaptable clothing, intramuscular injections and home health care.”
Dr. Dayaw said that the six key team members meet about two times per month. The MS Center also participates in clinical trials to determine the effectiveness and side effects of certain drugs. Most patients will benefit from a disease-modifying agent, an injection that won’t cure the disease, but will slow down its progression and decrease the frequency of relapses, said Dr. Dayaw.
Patients are encouraged to follow up with a neurologist every three to six months and undergo re-evaluation at the MS Center every six months. “Our dream is to have people come to the MS Center whether their neurologist is affiliated with Milford Regional or not,” she said. “I wish they’d become so educated that they don’t feel so distressed about their condition. Over the past fifteen years, we’ve made a lot of strides with MS treatment. The more you learn about it, the more hope you have. We want to be an open door.”
Julia Manning agrees that the gateway for communication is always open, and as a result, she has finally found an answer for a problem that has plagued her for years. While other neurologists said her periodic bouts of blunt facial pain were unrelated to MS, Dr. Dayaw and Catherine Grimes recognized the link and placed Julia on the proper medication.
“It was such a relief to find someone to help me with the pain,” said Julia. “I love the dynamics of the MS Center and I advise patients to join the support group. You can’t get the whole picture at an office visit.”
For information on The Center For Multiple Sclerosis, call (508) 422-2697.
Read more about Maria Pilar Elisa Dayaw, MD
