“MS is a chronic illness that affects the central nervous system, and so it’s important to have someone who has knowledge of the pathophysiology of MS, the consequences and outcome of MS, and the new profile of treatment for MS,” says Aliza Ben-Zacharia, a nurse practitioner and an assistant professor of neurology at Mount Sinai Hospital in New York City. “MS is not a temporary disease,” Ben-Zacharia says. “You need to have follow-up with the neurologist for the rest of your life. It’s important that the neurologist fits your life and properly communicates with you.” You may need to meet with several neurologists to find someone who matches your individual needs. “When I was first diagnosed with MS, the doctor handed me a piece of paper with options for different medications and told me to pick one,” says Michael Weiss, who was diagnosed with MS in 2004. “Then he left the room.” Weiss continued searching until he found a doctor who took the time to get to know him. “She spent two hours with me on my first visit,” Weiss says. “She asked me about my lifestyle, my kids, and my work. She was able to get a much better idea of the medications [that would] work best for my needs.” As a result, Weiss has been able to manage his MS symptoms well and lead an active life. Questions to Ask Your Prospective Neurologist Setting up a consultation to meet and interview a physician and staff is a good way to get a sense of whether you can trust and rely on a particular doctor throughout the course of your MS treatment. “The needs of multiple sclerosis patients vary widely,” says Adrienne Boissy, MD, chief experience officer at the Cleveland Clinic in Ohio. Dr. Boissy suggests asking prospective neurologists the following questions:
Are you fellowship-trained in multiple sclerosis? Fellowships require one to three years of additional study in the area of multiple sclerosis. Neurologists who complete such programs are generally more attuned to the needs of an MS patient.How much of your time is spent seeing MS patients versus general neurology patients? Although the answer to this question will vary depending on the practice, it’s a good sign if the majority of the doctor’s patients have MS.Are you engaged in any clinical trials related to MS? Clinical trials can give people with multiple sclerosis access to newer, potentially beneficial therapies. While not all neurologists run clinical trials themselves, they may be active in helping their patients enroll in trials for which they’re eligible.How many of your patients are currently on new MS therapies? This gives you an idea of whether the doctor is keeping up with new MS treatments. It may also tell you how aggressive or conservative the doctor is with regard to experimental treatment.Does your office offer infusions? Some MS drugs, including the steroids used to treat MS relapses, are delivered intravenously (directly into a vein). Traditionally, infusions are administered in hospitals, so in-office infusions could save you a trip to a hospital or other facility.Are you comfortable integrating alternative therapies into an MS treatment plan? If you think you might want to explore alternative treatments for MS, you’ll want to be sure that your doctor is open to considering the options with you.
RELATED: Who Is Getting Highly Effective MS Treatments? And When?
Communicating With Your MS Doctor
Along with receiving proper medical care, developing a working relationship with your doctor is an important part of your MS treatment. “Your doctor should make you feel cared for and listened to,” Boissy says. “If you don’t feel a connection, move on.” You should feel comfortable telling your physician your goals for treatment, asking for an explanation if you don’t understand a particular term or instruction, and asking how long you should expect to wait for test results. Pay attention to the nuances, adds Ben-Zacharia. “Do they look you in the eye? Do they listen to you? Are they answering your questions fully, or do you feel rushed?” You should also feel comfortable about getting a second opinion if you want one. If you ever feel as though you and your physician are simply not compatible, don’t be afraid to make a switch. Your health and happiness are what’s most important. RELATED: Shared Decision-Making for MS Treatment
Where to Start Your Search for an MS Doctor
When you’re ready to start looking for a neurologist who specializes in multiple sclerosis, begin by asking your primary care physician for referrals. You can also contact a multiple sclerosis support group to get recommendations from other people being treated for MS. In addition, you might use the “Find a Neurologist” tools at the sites of the American Academy of Neurologists and the National Multiple Sclerosis Society. Medical expertise is important, but communication skills are, too. As Boissy says, “You also have to trust your gut” when deciding whether a particular neurologist is a good fit for you. Additional reporting by Susan Jara.
