Talking to your doctor about managing MS

Last updated Feb. 17, 2025, by Mary Chapman
Fact-checked by Inês Martins, PhD

Knowing what type of doctor treats multiple sclerosis (MS) effectively while also feeling assured that they are good at collaborating with you and your other healthcare providers is an important part of managing MS. Most often, a neurologist will be the point person for your MS healthcare.

MS is a complex neurological disease that affects the central nervous system, the brain and spinal cord. It can cause a range of issues, such as those that affect mobility, sleep, and mental health. MS symptoms, and their severity, vary widely from person to person.

Open communication with your MS care team is essential for symptom management, reducing stress levels, staying up-to-date on MS treatment options, and making lifestyle adjustments to help with managing MS.

Preparing for your appointment

Before your appointment, think about specific MS symptoms and issues you want to discuss, such as tiredness and fatigue, vision problems, and cognitive changes. Also consider talking to your doctor about any side effects you may be experiencing from your medications, or a possible treatment switch if they are causing problems that are hard to deal with.

So you don’t forget anything important, write them down along with any questions.

“Once upon a time, the relationship between patient and clinician was very lopsided and one directional,” says Barry Hendin, MD, chief medical officer for the Multiple Sclerosis Association of America, “with the clinician doing much of the talking and making much of the pronouncements, [and] with the patient doing most of the acquiescing.”

These days, Hendin says, it is increasingly focused on shared decision making.

Typically, you can send or give your doctor access to your records ahead of time. But just in case, have a list of any MRI scans or other tests you’ve had and their results.

“If you have blood work or spinal fluid results, and you’re able to bring those, the more the better,” Hendin says. “Too often we see people without sufficient documentation.”

If this is your first time seeing a neurologist for MS, be prepared to discuss any medications you are taking, other health conditions you have, and your family history. While MS is not an inherited condition, about 15%-20% of people with MS have a family member with the neurodegenerative disease.

You may also want to share some personal details to help the doctor get a sense of what your life is like at this time and your priorities — even if it isn’t your first visit. For example, MS most commonly occurs during childbearing years when many women with MS may be thinking about having a baby. Letting your doctor know that starting a family is on your mind will help to drive the discussion that follows, Hendin says.

“Are you single? Married? Working? Just been let go? Do you smoke? It’s about being aware of all things that are important to decision making,” he says.

Sharing this kind of information can be key to your treatment options.

Asking the right questions

You shouldn’t feel embarrassed or worry that you’re taking up too much time by asking questions and voicing your concerns.

If your MS diagnosis is new, ask your doctor:

• What type of MS do I have?
• Will the disease continue to progress over time and how will you track it?
• Does my insurance cover my MS treatments?
• Have I had all the testing I need, or do you need more information?
• What are my disease-modifying therapy options, including potential benefits and drawbacks?
• Can I take any medication to manage my MS symptoms?
• Are there lifestyle changes that can help with managing MS, such as modifying my diet and exercise habits?

Ultimately, Hendin says, “the right questions are yours.”

Building a trusting relationship with your doctor

When you’re living with MS, having an honest, trusting, and transparent relationship with your neurologist and other members of your MS care team is especially important. MS is a chronic condition that will require lifelong care. You want to have a productive and supportive long-term relationship.

First, make sure any new clinician is a good fit for you and your MS healthcare team, which may include a mental health provider, urologist, and a physical therapist and occupational therapist, depending on your disease type, symptoms, and needs.

“It’s kind of like dating; not every visit to the doctor means the chemistry is right,” says Hendin. “Did the doctor take enough time with me, listen to me, provide answers? Did they become offensive or were they constructive?”

Over time, your MS symptoms and treatment options can change, and you want to feel supported by your doctor throughout. Asking questions is a good way to help your doctor help you, especially if you think a treatment isn’t working, or are experiencing severe side effects and want to try something new.

Ideally, you should feel that the doctor fully understands MS and its possible impact on your daily life, since they serve as your care point person for managing MS and collaborating with your healthcare team.

“Do they take their time, listen, and respond appropriately? If so, the trust becomes natural. If not, it’s hard to establish a relationship,” he says. “So part of building trust is looking for a clinician that establishes trust.”

Making the most of follow-up appointments

Follow-up appointments can be useful for reviewing your MS treatments and their effectiveness, and adjusting your treatment plan when needed. They also can reassure you that you’re in good care.

Hendin says that the way to get the most from your follow-up appointment is by being an active participant. For instance, saying something like: “In the six months since I last saw you, doctor, here’s what’s new. I’m better than I was, and I’m thrilled.” Or, “I’m worse than I was, and I’m worried.”

The follow-up visit may also be a time for you to bring up specific concerns that you may have been reluctant or embarrassed to bring up sooner, such as MS-related sexual problems. Or there may be something you’re worried about for the future.

“It’s your visit, your concerns,” Hendin says. “Ideally, they come up at the first visit, except the ideal is seldom.”

If there are certain issues, such as bladder or bowel dysfunction, that you don’t think to mention or hesitate to, don’t be surprised if your doctor brings them up first.

“If they don’t tell me they have bladder problems, I’ll ask,” Hendin says. “It’s important for them to tell me, and it’s also important for me to ask.”

Tips for communicating effectively

Clear communication with your MS doctor can improve health outcomes and strengthen your relationship with the person leading your care.

Other tips for effectively communicating with healthcare providers include:

• Bring a family member, friend, or caregiver to appointments to help you describe your symptoms or recall what you are told.
• After each visit, while still fresh in your mind, write down notes for future reference, or ask a companion to take notes during the appointment.
• Voice any concerns or worries in an assertive but respectful manner.
• If a question isn’t answered, repeat it, but try to ask it in a different way.
• If you don’t understand something, continue to ask questions until you do.
• Be as specific as possible about your MS symptoms, such as when they began, how long they have lasted, whether they fluctuate daily, and if they come and go or are persistent.

You should always feel comfortable questioning your doctor about all aspects of managing MS.

“The whole concept is empowerment and the ability to challenge their physician when things don’t sound right,” Hendin says. “Ask questions.”

Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.