Having multiple sclerosis (MS) can mean learning to tackle all sorts of challenges. Coping with your diagnosis. Fatigue. Muscle spasms. Fatigue. Depression. Blurry vision. Fatigue. Tremors. Tingling. Pain. Did we mention fatigue? The sheer number of potential physical and mental changes you may run into makes a comprehensive approach to your care super important.
Thankfully, you’ll have a care team of health professionals who will be a huge part of your life from now on, helping you through whatever comes next. “People need the ‘it takes a village’ approach so that they can tap into all the areas that help us build our brain reserve and care for MS symptoms,” says Mary Rensel, M.D., a neurologist at Cleveland Clinic’s Mellen Center for MS Treatment and Research.
The professionals on your care team will be able to help you with everything from treating your symptoms to managing your diet to protecting your mental health. As your needs change, the people you’ll need on your care team will probably change too, so it helps to know what’s available.
“The thing to keep in mind is that you don’t need all of these providers at the same time, but it’s best to find a provider in each of these categories that you trust so that when they are needed, you have a go-to person to contact,” advises Meghan Beier, Ph.D., a neuropsychologist and assistant professor of physical medicine and rehabilitation at the Johns Hopkins University School of Medicine in Baltimore.
Core Team Members
The foundation of your MS care team will be one or more of these healthcare providers:
Neurologist—This doctor specializes in treating nervous-system diseases and they will probably be the main person you see for MS. You may want to consider finding a neurologist who specializes in MS, suggests Florian P. Thomas, M.D., Phd., a neurologist and director of the Multiple Sclerosis Center at Hackensack University Medical Center in Hackensack, NJ. Dr. Thomas says this is because it’s easier for an MS specialist to keep up with new MS drugs and be able to customize treatment for each individual than it is for a neurologist who is treating a variety of conditions.
Primary care physician (PCP)—Your primary care doctor will help you manage any other conditions you might have and work with you on preventive care by keeping tabs on your family history and potential risk factors, Dr. Rensel says. A PCP can also help you navigate all of the different specialists and providers you may need to see, says Paven Bhargava,, M.D., a neurologist and assistant professor of neurology at the Johns Hopkins University School of Medicine in Baltimore.
Nurse practitioner, physician assistant, and/or MS nurse—These professionals can be seen more frequently, answer your questions, train you to use your medication devices, and help you with issues like bladder management, Dr. Beier says.
Optional Team Members
Depending on how severe your MS is and what your individual needs are, your core team may recommend other care team members in these areas:
Mental Health Providers
Your mental well-being is just as important as your physical health, and since mood disorders like depression are common in people with MS, a mental health provider can be a critical part of your team, according to Dr. Bhargava. Plus, if you’ve just been diagnosed with MS, there’s the whole learning-to-cope-with-a-chronic-illness aspect, too. Dr. Thomas says that at his MS Center, they regularly refer newly diagnosed people to the psychologist who practices there so they can get help adjusting to their diagnosis.
Mental health practitioners can diagnose and treat depression and anxiety, both extremely common side effects of having MS. They can also provide individual and/or family therapy, behavioral sleep interventions (for instance, to help treat insomnia), and behavioral pain management, says Dr. Beier. They can help with smoking cessation, appetite control, and sexual dysfunction too, notes Dr. Thomas. At the Mellen Center, Dr. Rensel says group appointments with the psychologist and some of the nurses are the usual protocol so that patients can connect with each other (though right now the groups are meeting on Zoom).
Mental health professionals you might see include:
Psychologist—These doctors diagnose and treat mental health conditions using different types of talk therapy, but they’re not medical doctors. Psychologists focus on your behavior and thinking.
Psychiatrist—In addition to diagnosing and treating mental health conditions, psychiatrists are medical doctors who can prescribe medications. “A psychiatrist, or neuropsychiatrist (psychiatrist that specializes in neurologic conditions) can help provide recommendations for how to medically manage emotional symptoms,” says Dr. Beier.
Social worker/licensed professional counselor—A social worker or a licensed professional counselor (LPC) can diagnose and treat mental health conditions, provide counseling services, and even help you coordinate your care.
These providers will likely be on your radar shortly after you’re diagnosed with MS because they teach you ways to optimize your health and well-being. If your symptoms start interfering with your daily activities, these professionals are the ones who will help you function and adapt.
Some rehab specialists you might get plugged into include:
Physiatrist—These doctors specialize in rehab and can treat your MS-related problems like weakness, numbness, or stiffness, as well as any pain you might have.
Physical therapist (PT)—A PT can help you maintain strength, assess your balance, help with walking, and work with you to improve your overall physical functioning, says Dr. Beier. And since prevention is always a goal, even if you don’t need therapy, Dr. Rensel suggests meeting with a physical therapist to put together an individualized exercise program. Balance training is crucial, too, since falls can be dangerous, especially in older people who already have osteoporosis, says Dr. Thomas.
Occupational therapist (OT)—An OT can help with your hand functioning, give you tools and strategies for doing tasks in your home and in the community differently so you can maintain independence, and teach you every-day problem-solving and task management skills, Dr. Beier says.
Speech-language pathologist (SLP)—If you have speech or swallowing difficulties, you may need an SLP to help. Some SLPs are also trained to test and treat difficulties with memory and thinking.
Neuropsychologist—MS affects memory, usually very early on, says Dr. Thomas. Neuropsychologists evaluate, monitor, and treat changes in memory, reasoning, concentrating, and thinking, giving people with MS methods to get around some of these problems.
There are many professionals who take a holistic approach, helping you focus on your lifestyle and your whole well-being to maximize your health and reduce your MS symptoms. At the Cleveland Clinic, Dr. Rensel says, they have integrative medicine services they use to help educate and support people with MS like nutritionists, yoga instructors, exercise physiologists, and acupuncturists. “It’s nice to use all the tools in the toolbox to improve your immune health and brain health and also treat the MS,” she says.
Some types of wellness professionals are:
Nutritionist—A healthy diet is important for everyone, but for those with MS, it can help you get to and/or maintain a healthy weight and feel better. In fact, a survey of MS patients and their diets published in Neurology found that a diet that’s high in fruits, vegetables, and whole grains is associated with less disability from MS. A nutritionist can teach you how your diet impacts your overall health, guide your decisions about healthy eating, and help you lose or gain weight, Dr. Beier says.
Exercise physiologist—These professionals work with you to develop a safe exercise program that’s custom-made for your needs. They can help you get relief from some of your symptoms with exercise and improve your quality of life by working on getting you into shape.
You may need doctors who specialize in other fields to treat you for problems or conditions that can come up or become worse due to your MS such as:
- Ophthalmologist or neuro-ophthalmologist—An ophthalmologist is the eye doctor who may have been a part of your MS diagnosis. You’ll see them to monitor your eyes for the visual changes MS can cause, like blurry vision, eye pain, double vision, and involuntary eye movements. You may need to see a neuro-ophthalmologist at some point. These doctors specialize in eye problems that are caused by the nervous system rather than the eye itself. Neuro-ophthalmologists are often needed because “one of the most common presenting symptoms of MS is what we call optic neuritis, which is an inflammation of the optic nerve,” says Dr. Thomas. Temporary blindness affects many people with MS, though “most of them get better after a couple of weeks,” he says.
Urologist or gynecologist—Bladder, bowel, and sexual function can be affected when you have MS, so you might need a urologist or a gynecologist (for women) to treat these issues. You can even see a neuro-urologist, urologists who specifically treat urinary tract problems that are caused by neurological conditions like MS.
Geriatrician—While MS used to shorten people’s lifespans, now you can expect to live close to a normal life expectancy, Dr. Thomas says. “I tell my patients that I want them to dance at their grandchild’s wedding, which means you typically need to get into your 80s,” he says. “When they’re above age 60, they should see a geriatrician because giving older people medications is much more complex than young people.” A geriatrician specializes in conditions older adults experience.
Pediatrician—Conversely, for kids with pediatric MS, you might have a pediatrician on your care team since they’re well-versed in what works best for the younger set.
You may find yourself consulting your pharmacist quite a bit too. Pharmacists are a fountain of information when it comes to explaining interactions between medications. Dr. Beier says they can also provide recommendations about which medications may be making your symptoms worse, like fatigue and difficulty concentrating or thinking.
Choosing Your Team Members
Make sure that any provider you see is knowledgeable about the special needs and issues that can arise with MS. Try to find specialists who have experience with MS if it’s at all possible. Even better, if you can, seek out an MS center where all the services you need are available, advises Dr. Thomas. Not only is your care integrated, but your team members will be able to work together and communicate easily to keep everything flowing smoothly. And thanks to telemedicine, which has seen a significant surge recently, even people in rural areas can tap into MS centers and come for in-person visits once a year or so, Dr. Thomas says.
No matter who you see, you should feel comfortable with them since this will be a long-term relationship. If you need help finding an MS center or providers near you, the National MS Society has a comprehensive list of resources.