7 MS Management ‘Mistakes’ You May Be Making

Managing multiple sclerosis (MS) can be challenging, requiring you to pay attention to many different things at once: taking a disease-modifying therapy, treating symptoms, regularly seeing a neurologist, getting an annual MRI, possibly going to physical therapy or seeing other specialists, and more.

And this disease is highly individualized — doctors can’t tell you outright that you’ll have certain symptoms or will experience them in a specific way, and it’s difficult to forecast how you’ll progress. With all that going on, and the effects of symptoms like fatigue, there may be important aspects of MS management that are falling by the wayside.

Here are some common mistakes to avoid.

1. You Don’t Report (or You Downplay) Symptoms

“Patients sometimes underreport symptoms or don’t discuss non-MS health concerns, which can limit comprehensive care,” says Carrie Hersh, DO, a neuroimmunologist at Cleveland Clinic in Las Vegas. Dr. Hersh encourages patients to keep a symptom diary, prepare their questions before visits, and speak up about new or changing symptoms.

Before an appointment, it may also help to brainstorm the three most bothersome symptoms that are impairing your daily life and prioritize talking about them during the visit, recommends Cole Harrington, MD, PhD, an assistant professor in neurology at the Ohio State University Wexner Medical Center in Columbus. It’s common to feel pressed for time during a visit, and this organization can help you get your main concerns out front.

2. You Aren’t Open About Your Goals

It’s important to be open with your healthcare team about your specific treatment and lifestyle goals. When you’re in your appointment, Dr. Harrington recommends being open about your overall goals in care, as well as your fears (for example about side effects of medication), and other factors, like your access to or ability to afford medical care. “Being up front is helpful so that, as a patient, you are not getting recommendations that are not in line with your goals and values,” they explain.

3. You Haven’t Seen Your Primary Care Provider Lately

Having MS doesn’t insulate you from other, non-MS-related health concerns. In addition to regularly seeing a neurologist for your MS care, you should also have routine appointments with your primary care provider (PCP). “It’s important to manage high blood pressure, high cholesterol, your weight, and diabetes, as these conditions can impact brain health,” says Harrington.

Your PCP or another specialist (such as an endocrinologist if you have diabetes) is the best person to direct this care, including managing any medications you are on, says Harrington. In addition, they can advise on vaccinations and other health screenings (such as cancer screenings) that you need to make sure that your whole body is being taken care of.

4. You’re Not Paying Attention to Your Mental Health

While many people with MS are aware and concerned about their mental health, it’s important not to downplay or dismiss it. How you feel emotionally is just as important as how you’re doing physically. “I think it’s important to seek out help if mental health is affecting your quality of life or preventing you from doing things you want to do or seeing your doctor for care,” says Harrington.

There are several ways you can assess this. “We have trained neuropsychiatrists who assess cognitive function if there are concerns about memory. This testing can tease out if there are underlying mood disorders contributing to these symptoms,” they explain. In addition, your neurologist may also be able to refer you to a therapist who can work with you in talk therapy to address negative thinking patterns.

5. You’re Not Putting Enough Emphasis on Lifestyle Habits

Lifestyle management is important in MS treatment. “Routine physical activity, a healthy anti-inflammatory nutritional regimen, stress management, restorative sleep, and abstaining from unhealthy behaviors like tobacco use play a meaningful role in improving the overall MS disease course, symptom management, and quality of life,” says Hersh. Together, they can help support your mood, energy levels, and cognitive health, she says.

6. You’re Not Prioritizing Your Sleep

To improve sleep, Hersh advises patients to maintain a consistent sleep-wake routine and practice good sleep hygiene habits. The sleep hygiene recommendations that apply to everyone can also make a big difference in your MS. Those include, she says, sleeping in a dark, cool, and quiet environment, limiting screen time 30 to 60 minutes before bed, avoiding caffeine in the afternoon and evening, limiting alcohol, exercising earlier in the day, and following a relaxing bedtime routine.

7. You Haven’t Considered Mobility Devices and Support

There are other aids and resources that are often unexplored, says Harrington. For example, if you have foot drop, a physical therapist who specializes in MS might recommend a nerve stimulator device rather than a foot orthotic that you find bulky. Or, you may benefit from Botox injections to loosen muscles and reduce spasticity, eliminating the need for an assistive device, says Harrington. Or, an occupational therapist may help you outfit your car with adaptations that help you drive safely. What’s right for you will be individual, but the point is to explore these other resources and professionals who can help.

In addition, Harrington also recommends looking into whether there's an assistive device clinic available to you. These places can evaluate you for aids needed for vision or mobility. “A lot of these subspecialties are overlooked in management, either in terms of devices that can be used or other strategies that improve mobility or day-to-day management of symptoms,” Harrington says.