Living with MS: Treatments and Tips to Live Well with MS
Key takeaways for patients
- Follow your MS treatment plan, including disease-modifying therapies, symptom management, and healthy lifestyle choices.
- Call your neurologist for new or worsening symptoms. Get emergency care for a head injury with a fall, new or worsening vision loss, or symptoms of a stroke, heart attack, or allergic reaction.
- Care for your whole health—go to regular primary care appointments, get recommended screenings, and take care of your mental health.
Multiple sclerosis (MS) is a progressive condition that affects your nervous system—the brain, spinal cord, and optic nerves behind your eyes. It’s an autoimmune disease, meaning the body attacks its own healthy cells. In MS, the body attacks myelin, a fatty wrapping that covers nerve cells.
Patients with MS experience symptoms related to the functions the nerves control due to nerve damage. With proper medication, healthy lifestyle choices, and symptom management, many people live a healthy, full life with MS.
Michael Levy, MD, PhD, a neuroimmunologist with Mass General Brigham Neuroscience Institute, shares his best tips for living well with MS.
Follow your MS treatment plan.
As with any chronic condition, it’s important to follow the treatment plan you and your care team create. This includes monitoring your condition and your reaction to medications through regular MRIs, blood tests, and neurological exams.
There are different types of MS—some that have periods of remission and others that steadily progress. Your neurologist helps you manage the symptoms, side effects, and progression of your disease.
Researchers are working to find a cure and develop new treatments, design better diagnostic tests, and improve quality of life for people with MS.
“While MS doesn’t have a cure yet,” says Dr. Levy, “there are many excellent treatments and symptom management strategies to combine into a comprehensive treatment plan.”
A person diagnosed with MS can live well with the disease, with proper treatment, symptom management, and a healthy lifestyle.
Disease-modifying therapies (DMTs)
DMTs are medications that change the course of the disease. They slow disease progression, reduce the number of relapses, and reduce the severity of relapses. They are available in multiple forms including oral medications, IV infusions, and injections.
Your neurologist helps you decide which DMT is right for you.
Things to consider when choosing a DMT:
- Delivery method: Are you comfortable giving yourself injections? Are IVs a difficult experience for you? Are you able to safely swallow pills (especially if you’re experiencing MS tongue)?
- Side effects: Each medication has its own side effects. If you start a medication and the side effects impact your daily life, talk to your neurologist about trying a different medication.
- Lifestyle alignment: You may avoid oral DMTs because you don’t want to take a daily medication, or you may travel frequently and not want to bring an ice pack for your injectable medication. An IV infusion over several hours may not fit into your schedule. Pick a DMT that fits your life.
You can try a different DMT if the first one isn’t working for you. Your neurologist helps you find the DMT that works best for your needs and has the least impact on your daily life.
Symptom management
MS symptoms are unique to each person. Your symptom management plan is tailored to your needs, health goals, and lifestyle.
Options to discuss with your care team include:
- Medications: For pain, spasticity (muscle tightness), dizziness, or other symptoms, your neurologist recommends medications in addition to your DMT that can help reduce symptom frequency or severity.
- Physical therapy, exercise, or stretching: Moving your body in specific ways can help ease muscle tightness, improve fatigue, and reduce pain. Exercise is also a mood booster which can help people with MS who are struggling with emotion-related symptoms.
- Integrative therapies: Acupuncture, massage, or meditation can help with a variety of MS symptoms including depression, pain, numbness, or the MS hug (also known as dysesthesia, a squeezing sensation some people with MS experience).
Healthy lifestyle choices
Making healthy choices helps you manage your MS and avoid other health problems like heart disease or diabetes.
Here are some ways you can make healthy choices with MS:
- Learn about exercises for MS. A Mass General Brigham physical therapist shares how exercise can help you manage symptoms of MS and describes the best exercises options.
- Get tips on how to follow an MS-friendly diet. A Mass General Brigham dietitian offers guidance on anti-inflammatory meal plans to help you manage MS symptoms.
- Quit smoking. Quitting smoking can be very difficult to do alone. If you need help, ask your primary care provider (PCP) about Mass General Brigham smoking cessation programs. They can connect you with resources, like coaching, to help you succeed.
- Limit alcohol consumption. If you need help to limit drinking, tell your PCP. They can connect you with resources to help.
- Avoid hot weather, which can trigger flare-ups.
- Discuss any supplements with your care team.
Using assistive devices
MS causes mobility problems through weakness, spasticity, pain, gait issues (problems with how you walk), and other symptoms. You may need a cane, walker, wheelchair, or other assistive device.
“People with MS sometimes struggle with the unpredictability of the disease—that one day you might need your cane and the next day you might not,” says Dr. Levy. “Use your assistive devices when and how you need them. They help keep you safe while walking, reduce tiredness and fatigue, and help you participate in the activities of daily life.”
When to call your neurologist
In between visits for your regular neurology exam, contact your neurologist if you have any new symptoms or worsening symptoms. Changes in symptoms may indicate a flare-up or a relapse.
Flare-ups are usually caused by overheating, overexertion, or fever from an infection. They cause worsening of symptoms you have experienced before. Your symptoms resolve when your body returns to normal temperature, and the inflammation goes away.
Your neurologist may treat your flare-up with steroids to reduce inflammation and ease symptoms. If your symptoms are mild, your neurologist may recommend letting the flare-up run its course without medication.
If your symptoms are not caused by infection or overheating and they last longer than 24 hours, you may be in an MS relapse. Your neurologist treats your relapse with steroids to reduce inflammation and end the relapse faster.
Physical therapy can help ease symptoms and help you regain strength and mobility. If the relapse is severe and doesn’t respond to steroid treatment, you may need plasma exchange, an inpatient procedure that removes antibodies from your blood.
When are MS symptoms an emergency?
MS is an unpredictable disease, and it can sometimes be difficult to decide if what you’re experiencing requires emergency care.
If you experience any of the following symptoms, get emergency medical attention right away:
- New or worsening vision loss
- Symptoms of a stroke
- Symptoms of a heart attack
- Signs of an allergic reaction such as swelling, hives, or difficulty breathing
- A head injury during a fall
“Trust your instincts,” says Dr. Levy. “You know your body best, and if you’re experiencing symptoms that are new, disruptive, and worrisome, get emergency care.”
Don’t forget your routine health care checkups.
MS is just one aspect of your health. You still need to see your primary care provider (PCP), your dentist, an ophthalmologist, and other preventive or specialist providers. Follow the recommended schedule for well visits and screening tests like mammogram, colonoscopy, or dental cleanings.
Mental health care is extremely important for people with MS. Depression and anxiety are common MS symptoms and can be treated with cognitive behavioral therapy (CBT, also known as talk therapy), medication, meditation, or a combination of tactics.
“The stress and unpredictability of the condition can increase anxiety and depression in people with MS,” Dr. Levy says. “Make an appointment with a therapist to develop coping strategies and have support throughout your MS journey.”
Questions to ask your neurologist about living with MS
When you see your neurologist, bring a list of questions to make the most of your time.
Questions that might be helpful include:
- How often do I need imaging, blood work, and neurological exams?
- What disease-modifying therapy fits best with my lifestyle?
- How can I manage my daily symptoms?
- What vitamins and supplements are safe and helpful for me to take?
- Are there medications, foods or supplements, or activities I should avoid? (Some medications or foods can interact with your DMT or symptom management medications.)
- What exercise and physical therapy plan would you recommend?
- Are there clinical trials or new treatments I should be aware of?
- How can we manage my MS through pregnancy, menopause, or other life events?
- What vaccines and other precautions do I need as someone with MS?
