If you have multiple sclerosis (MS) or know someone who does, you know that a big piece of living with the condition is the heightened uncertainty of what each day may bring; the ups and downs of the condition are well beyond what most healthy people can understand. Even if you’ve grown to accept your “new normal,” it doesn’t necessarily make it any easier. Learning about the additional challenges that may come along and how to navigate them can make a huge difference in quality of life, both for you and those around you.
The following tips, tools, and resources can help you to live well with multiple sclerosis.
Managing Daily Life and Complications of MS
Paying attention to your symptoms and how your body feels is critical to staying healthy when you have MS. Pushing too hard for too long can lead to a worsening of symptoms or even a flare-up, or relapse. But adhering to a healthy lifestyle can be easier said than done as many of the challenges of MS — lack of mobility, financial strains, or even depression — often make even harder to do what you know you should do. Figuring out what works for you — and what doesn’t — can help you live your best life with MS.
Diet for MS
How what we eat can improve or worsen various chronic illnesses is a growing area of research. Although some people with MS may experience some symptom relief when they eliminate or add certain foods to their diet, there’s no evidence yet that any particular diet can impact disease progression in MS.
It’s a good idea to discuss any specific dietary changes you’d like to make with your doctor; some popular diets could have a negative impact on MS. Currently, the diet recommended for MS is similar to what’s recommended for everyone: lots of fiber, fruits, and vegetables, and limits on the amounts of unhealthy fats and sugar you eat. Staying at a healthy weight is important for everyone but particularly if you have MS. Having obesity can increase your risk for fatigue and depression, and obesity in children and teens has been associated with an increased risk for MS later in life.
Exercising With MS
Although the fatigue and pain that often comes with MS can make physical activity difficult, exercising can improve mobility and make you feel better. A physical therapist or specially trained exercise professional can share specific exercises designed to improve foot drop, walking, balance, and going from sitting to standing.
It’s also possible to increase your strength, flexibility, and level of fitness when you have MS. Although exercise can lead to soreness and fatigue, working with an expert can help ensure sure you don’t overdo it. A consistent program that builds your strength and stamina can actually help reduce fatigue in the long run.
Managing Your Prescriptions for MS
When it comes to medication to treat MS, there are more options than ever before — currently, there are 18 approved disease-modifying therapies. Once you’re diagnosed and you and your neurologist decide the best medication for your situation, you’ll want to start treatment as soon as possible.
“Whether you have a slowly or rapidly progressing form of MS, a disease-modifying therapy will reduce the relapse rate by up to 50 percent,” says Michael Hutchinson, MD, PhD, an associate clinical professor of neurology at the Icahn School of Medicine at Mount Sinai in New York City.
Once your doctor decides what therapy is right for you, you’ll be shown the correct way to take your medicine. It can take time to determine if the drug is working appropriately or whether or not you should switch medication. In many cases, you’ll need to have periodic blood tests to make sure your body is metabolizing and responding to the medication appropriately.
Complementary and Alternative Medicine for Multiple Sclerosis
Many people with MS seek out natural remedies and complementary therapies to augment their disease-modifying therapy. Before you try out any new vitamins, herbs, or supplements it’s important to talk with your doctor first, says Ellen M. Mowry, MD, associate professor of neurology at Johns Hopkins Medicine in Baltimore and a specialist who treats people with MS.
- Vitamin D There is evidence and several ongoing studies that show a connection between vitamin D and MS. If you haven’t had your vitamin D levels tested, ask your doctor; they may recommend a supplement if you’re deficient. Because too much of vitamin D can be toxic and cause serious side effects, it’s best to take it under the supervision of a doctor who can monitor your level.
- Ginkgo Biloba An extract that comes from the leaves of the ginkgo tree, ginkgo biloba is taken to improve brain function and memory. Although there have been mixed results about how effective the herb is for helping with MS memory loss, there is evidence that it can help with fatigue.
- Ginseng This herb failed to improve fatigue in MS in a six-week study and caused some study participants to experience insomnia.
- Green Tea Although it hasn’t been proven that green tea helps MS symptoms, it is rich in antioxidants and other healthy compounds.
Essential oils are collected from plants using processes like distillation (using steam) or cold pressing. The extracted substance is then added with a “carrier” oil to create the finished product. Although there are small studies that suggest benefits for anxiety and cognition, most of those were performed on animals and not people. As with any complementary therapy, it’s a good idea to check with your doctor first.
Turmeric, a common spice and a key ingredient in curry powder, comes from the rhizomes (underground stems) of a plant in the ginger family. The rhizomes can be ground and dried to make a powder and then made into capsules or extracts. Although there have been many animal studies that show turmeric can have anti-inflammatory properties, most experts agree that it needs to be studied further before it can be recommended as an alternative treatment for people with MS.
Apple cider vinegar is made by fermenting apple juice; the sour taste comes from the acetic acid it contains. It’s a probiotic and contains vitamin B and polyphenols, or plant-based antioxidants. Although there is some evidence that it can help with GI symptoms, it hasn’t been specifically studied in people with MS. If you have a symptom or health goal that you think apple cider vinegar may help with, let your doctor know. They’ll be able to help you determine if apple cider vinegar is the best way to go.
Home Accessibility and MS
For some people, the impact of MS on balance and leg strength can make getting around a challenge; many people with MS eventually need to rely on a walker or even a scooter or wheelchair in their home. Outfitting your living space to accommodate your assistive device may mean modifying areas like your entryway, kitchen, and bathroom. If you aren’t quite ready for a home modification project, just clearing away clutter and removing decorative accessories like rugs or baskets can go a long way in creating space and helping to prevent falls.
RELATED: Living With MS: Home Adjustments
Mobility Aids for MS
Fatigue and balance issues are common in MS, and eventually you might opt to use a mobility aid. The good news is that most insurance companies pay for an evaluation with a physical therapist who can help you select the device that’s right for your needs. There are many options to consider:
- Canes There are two main types of canes, a single point cane and a four-point cane, where four pegs connect to the main shaft. Some people also elect to use two canes, one in each hand.
- Walkers A walker is a good choice if you notice that you’re beginning to stumble more. A standard walker has rubber grips on the bottom to help with stability.
- Rollators Instead of flat rubber grips on the bottom like a walker, rollators (as the name might suggest) have wheels on the bottom.
- Trekking Poles These devices are good for people with impaired balance, and they encourage a more upright posture compared with a cane.
Although some people with MS resist or put off using a walking aid, it can actually improve your independence and take some of the stress out of getting from here to there.
If you have MS, deciding to use a wheelchair can be a big decision. It may mean that your disease has progressed to the point where you don’t feel safe getting around using other mobility devices. But it’s not an all-or-nothing decision; many people decide to use a wheelchair for certain activities or environments and not full-time. There are manual wheelchairs, which require arm strength or someone to push you, and powered scooters and wheelchairs, which move automatically with buttons or levers you control. Although many people put off using a wheelchair, it can actually provide freedom and new opportunities for activities that weren’t feasible with a cane or a walker.
Traveling With MS
You might think because MS is a disease that can flare up unexpectedly due to stress, fatigue, heat, or an infection that traveling would be off-limits, but that’s not the case. “Most people with multiple sclerosis have no travel restrictions,” says Mary Rensel, MD, a neurologist who specializes in MS at Cleveland Clinic.
There are things you can do to raise the chances that your trip goes smoothly. For one, make sure you have all the medication you need, and don’t forget to bring along a way to store it at the needed temperature. Bring any relevant medical information, and check ahead to see if there is medical care available at your destination. Finally, build in extra time to take breaks, and schedule activities so you don’t have to rush or be stressed during your journey.
If you use a wheelchair, the key to a successful travel experience is to communicate well in advance. Think about each step of your trip, and email or call the travel agency, airline, and hotel to let them know exactly what you need. Do your research and planning about transportation and dining options so that once you arrive at your destination, you can worry less about details and enjoy your time away.
Finding Doctors for Multiple Sclerosis
Most people who successfully manage MS have a team of medical professionals to help with different aspects of the condition. But because multiple sclerosis is a chronic illness that affects the central nervous system, it’s primarily treated by a neurologist, a doctor who specializes in treating diseases of the brain, spinal cord, and nerves.
You may need to meet with several different neurologists to find one with whom you feel comfortable. Keep looking until you find the right fit — you’ll need to follow up with these specialists for the rest of your life. When you meet a new neurologist, ask questions about their training, how many patients they see with MS, or if they are involved in research.
If you’re not sure where to start to find a neurologist, ask your primary care doctor, or use the “Find a Neurologist” tools at the websites of the American Academy of Neurologists and the National Multiple Sclerosis Society.
In addition to your neurologist, you may consult with several different other healthcare providers for MS.
- Nurse or Nurse Practitioner (NP) An NP is often your first point of contact and can help educate you and your family about MS.
- Primary Care Doctor Sometimes called a family doctor or internal medicine doctor, a primary care doctor takes care of your non-MS health needs.
- Physical Therapist (PT) These health professionals can help teach you exercises to increase flexibility and strength and improve you balance.
- Occupational Therapist (OT) An OT can give you MS “life hacks” to help you conserve energy and function better with daily activities like driving, cooking, and grooming.
- Ophthalmologist Having a vision specialist on your team can help you with any potential vision loss and help you preserve your sight.
- Urologist A urologist can help with urinary tract issues and sexual concerns for men.
- Nutritionist or Dietitian Although there is no “MS diet” that will control or cure MS, these experts can help you ensure you’re eating the right amount of healthy foods.
- Physiatrist Also called a physical medicine or rehabilitation specialist, a physiatrist treats medical problems that cause disability.
- Speech Language Pathologist These experts can help with difficulty swallowing or problems with speech.
Your Mental Health and Multiple Sclerosis
Receiving a diagnosis of multiple sclerosis or developing a new symptom or complication of the disease is upsetting and can provoke feelings of anxiety. It can also lead to grief, which may include feelings of shock, anger, guilt, and sadness. With MS, the experience of grieving can happen over and over, as the disease progresses and causes new losses.
But grief is not the same thing as depression, which is a prolonged feeling of being down, depressed, or hopeless, often accompanied by a loss of interest in doing things that were once pleasurable.
Depression is one of the most common symptoms of MS. At least half of all people with multiple sclerosis will experience a major depression at some point in their lives, according to Rosalind Kalb, PhD, a psychologist and a consultant to the National Multiple Sclerosis Society in New York City. It’s not just a result of the challenges and worries that come with MS; there’s also evidence that the inflammatory changes in the immune system are associated with depression, says Dr. Kalb.
Managing Depression and Multiple Sclerosis
Taking steps to manage your fatigue, stay connected with friends and family, get enough rest and regular exercise, and follow a healthy diet can help to improve your mood. But even the best self-care may not be enough to treat depression. If you feel depressed or weighed down emotionally, ask your primary care doctor for a referral to a psychotherapist, preferably one who is familiar with MS. You can also get help finding sources of social and emotional support by going online to email or live chat with an MS Navigator from the National Multiple Sclerosis Society.
Managing Anxiety and Multiple Sclerosis
Working with a professional therapist can also be helpful in managing the anxiety that often comes along with MS. And there are strategies you can employ on your own to relieve anxiety, such as practicing mindfulness, exercising regularly, and strengthening your social support network.
How Multiple Sclerosis Can Affect Your Relationships
When you have multiple sclerosis, it changes the way you relate to your family, friends, and spouse or romantic partner — or potential partners, if you’re single. Your role in the relationship or the way you view yourself may change because of MS symptoms like fatigue or depression. If you have to stop working or begin working from home, that can impact the dynamic in your family, too. Navigating this new territory takes time and patience — both with yourself and your loved ones.
Your Family Relationships
A good rule of thumb with MS and family relationships is don’t assume anything. Talk to your family about how much help you want and what you’d like to do for yourself. If there are ways you want to maintain your independence, let your loved ones know.
Make sure you are taking care of yourself, and encourage your family members to do the same. Remember to insert lightness and fun in your life whenever possible; focus on what you can still do and enjoy together as a family rather than what you’ve lost.
Sometimes you may feel guilty or worry that MS has taken over your family life. Finding ways to carve out “MS free” zones or time can help give everyone a break. Look for ways to take the MS out of family life; reserve time, money, and even actual physical space in your home where you all can focus on the present moment. Putting MS and MS-related concerns on the backburner, even for a short period, can be good for you and your family.
Your Friendships and Multiple Sclerosis
Many people with MS (and without) don’t have a great relationship with their “next of kin,” or their family members can often live hundreds or thousands of miles away. Friends, or our “chosen family,” can provide invaluable support when you have MS. But even a well-meaning friend can say or do the wrong thing at times.
To keep your friendships strong, let your friends know what you need from them. Maybe you need someone to just hang out with you and chat or do something you both enjoy. Or maybe you need a specific type of help, such as being picked up for an outing if you can’t drive. The clearer you can be about your needs, the easier it is for your friends to provide for them.
Your Romantic Relationships and Multiple Sclerosis
A diagnosis of MS can create shock waves in even the most stable relationships. Many unknowns are immediately introduced with no easy answers. How fast will the disease progress? What will the impact be on our children? Should we have children? How will we afford the medical costs? It’s common for either partner to feel stress and maybe even depression. Communicating with each other and getting professional support through a therapist or by connecting with an organization like the National Multiple Sclerosis Society can be invaluable.
It’s not a question of if, but how MS will change your relationship with your partner. Personality traits can become exaggerated, or dynamics can be reversed in ways both large and small. A diagnosis of MS might mean a shift in who the “breadwinner” is or who picks up the kids and does the grocery shopping. Even small changes can create misunderstandings and even resentment if couples don’t communicate.
There’s no doubt that having MS is hard, but being the partner of someone with MS is challenging, too. Although partners don’t have the symptoms and physical issues that come with MS, they do have to routinely adjust their expectations and behavior. It can be challenging for spouses to find outside support, but it’s worth seeking out.
Family Planning With Multiple Sclerosis
Whether or not to have children is a very personal decision with no right or wrong answer. Because having MS adds an extra layer of uncertainty as well as a significant financial burden, the choice can take on even more gravity. Although MS will always be a factor in the decision making, earlier diagnosis and improved medication have made the decision easier for some couples.
Dating With Multiple Sclerosis
It may feel as though dating after you’ve been diagnosed with MS is too complicated. Some people can’t get past the first big question: when and how to tell someone about your diagnosis. A good rule of thumb is to do what you would like someone else to do if the shoe was on the other foot, says Kalb. If you want to be in a relationship, don’t let fear keep you from the dating scene; many people have found love after MS.
Cory Martin, a writer living in Los Angeles, thought the dating scene was already hard enough without adding MS to the equation. “‘Would you be able to take someone in sickness and in health when the sickness is inevitable?’ That’s the tough question that exists when you’re dating with MS,” says Martin. Fortunately, after many false starts, she found someone who answered that query with a resounding “Yes.”
RELATED: Dating With MS: My Love Story
Trish Palmer, a travelling nurse based in Chicago, didn’t want to accept the help or support from her live-in boyfriend when she first was first diagnosed with MS. Eventually the two broke up, and Palmer struggled for several months until she found the right medication to control her symptoms. Now Palmer is dating again and realizes how important the support of friends and a romantic partner can be. “Short version: Let people in; they can handle it,” she says.
Sex Life With Multiple Sclerosis
MS can have an impact on your sex life, which can include reduced desire for sex, diminished sexual pleasure, and changes in sexual function. For men, it may become difficult to get or maintain an erection. Reduced lubrication can occur for women. Both sexes may have sensitivity changes in their genitals, as well as difficulty reaching orgasm.
The symptoms of MS, such as incontinence or fatigue, can get in the way of intimacy, too. It’s important to communicate with your partner and make sure that a healthy sexual relationship remains a priority. If there are sexual function issues, talk with your doctor.
A sex therapist can be a valuable member of your healthcare team. Although some physical problems should be discussed with your neurologist or primary care doctor, a sex therapist can also offer strategies to address these and other kinds of issues. These experts will help expand your definition of sex and sexuality to enhance your pleasure and sense of connection with your body and partner.
Drugs and Medication for Multiple Sclerosis
There are several different types of medication used to treat people who have MS:
- Disease-modifying drugs, which can prevent acute MS attacks, or relapses, and slow disease progression
- Corticosteroids, which are used to help control severe symptoms in the event of a relapse
- Drugs to treat symptoms of MS, such as pain, walking ability, muscle spasticity, and gastrointestinal symptoms
Disease-modifying drugs aren’t designed to improve specific MS symptoms; instead, these slow the progression of disability caused by MS and reduce the number and severity of relapses in people who have the most common form of the condition, known as relapsing-remitting MS (RRMS).
There is only one disease-modifying medication, Ocrevus (ocrelizbumab), that has been shown to lower the risk of disability progression in people with primary-progressive MS (PPMS).
When a person has few relapses but continued disease progression and increased disability, it’s considered a second phase of RRMS, called secondary-progressive MS (SPMS). There are currently three drugs approved to treat SPMS, with two approved in the spring of 2019.
Researchers are working on developing a therapy that will actually repair the myelin that’s been damaged by the disease. If successful, this could potentially restore function in people with MS. These promising cell therapies and myelin repair strategies are currently being studied and tested in clinical trials, according to the National Multiple Sclerosis Society.
RELATED: MS Medication
Money Matters: The Cost of Living With Multiple Sclerosis
It’s estimated that the cost of living with MS can be more than $70,000 per year, according to the National Multiple Sclerosis Society. This figure can include medication, doctor visits, rehabilitation, mobility aids, and home and auto modifications. The ability to work — or loss of that ability — is also a factor in the financial burden that MS can cause; depending on your symptoms and disease progression, keeping a full-time job can be difficult.
Medication Prices for Multiple Sclerosis
Costs for prescription drugs have continued to rise in the past decade, and this is especially true for people with MS. A recent study found that out-of-pocket expenses for people with MS have risen by a factor of 20 over the 12-year period from 2004 to 2016. Talking with your doctor about medication costs, and choosing a lower-deductible insurance plan, may make a difference. Your pharmacist may also be able to help you find programs or strategies to lower your drug costs.
Managing Your Work Life With MS
It can be difficult to continue to work when you have MS, but there are many potential benefits to remaining employed if it’s possible, according to Lauren Strober, PhD, a senior research scientist in the Center for Neuropsychology and Neuroscience Research at the Kessler Foundation in East Hanover, New Jersey. For many people, work can provide, “self-esteem and identity — even their main social support,” says Dr. Strober.
If, when, and how you disclose that you have MS to your employer is up to you. Although you’re not legally required to share your diagnosis, if you begin to have noticeable symptoms, your employer or coworkers might become concerned. If you decide to share your diagnosis, you may also want to request accommodations so that you can continue to contribute at work.
Many people with MS find that they can stay happily employed by asking for a few accommodations at work, which is protected under the Americans With Disabilities Act (ADA). Examples of these sorts of accommodations would be a flexible schedule, the ability to work from home sometimes, changes to your work station, or even modified assignments.
Even with accommodations, many people with MS find that holding down a traditional full-time job isn’t possible anymore. There are other ways to make ends meet, including starting your own business or applying for disability benefits.
Can You Apply for Disability if You Have MS?
Many people with multiple sclerosis get Social Security Disability Benefits (SSDI). It’s estimated that about 70 percent of people with MS leave their job within 10 years of their diagnosis, according to the MS International Federation’s Global MS Employment Report 2016.
SSDI is a cash benefit for people who have worked long enough and paid enough Social Security taxes to have “insured stats.” The MS has to be severe enough to keep you from working a full eight-hour day, five days per week. There are screening tools to help you know what you might qualify for, as well as a calculator to help determine your monthly benefit.
Patient Stories: Living With Multiple Sclerosis
Living with MS is a nonstop lifelong challenge. Support from health professionals, family, and friends can go a long way in helping you cope with the symptoms and the uncertainty of what each day may bring. You can also gather inspiration and strength from other people who have multiple sclerosis; it’s important to remember that no matter how you’re feeling, you’re a valuable person who matters in the world.
Lydia Emily: Artist Finds Ways to Create While Dealing With MS Pain and Suffering
A painter and muralist who lives in Los Angeles, Emily was diagnosed with MS after a two-year battle with cancer. After injuring her shoulder while working on a mural, the 48-year-old mother of two began experiencing numbness in her tongue, and an MRI revealed lesions on her brain and spinal cord. Although Emily has vision loss and muscle weakness, she continues to find workarounds to stay active as an artist and a community activist.
Lauren Smith: Dancer and Young Mom With MS Motivated by Trainer, Now Trains Others with MS
A dance teacher and mother of two children under the age 10, Smith was living a very active life when she lost strength in both her legs. Even after medication helped relieve some of the tingling and numbness in her arms and legs, her energy and strength were completely zapped. Rather than continue to struggle alone, Smith reached out to a trainer with MS who helped her accept her “new normal” and taught her exercises that dramatically improved her strength and stamina. Smith’s experience ignited a passion to help others, and she’s now a trainer herself.
Andrew Silverman, MD: Diagnosed With MS in Residency, Doctor Uses His Own Experience to Connect and Help Patients
When Dr. Silverman was in his second year of residency to become a pediatric oncologist and training to run the Brooklyn Half-Marathon, he began to feel weak and tired. By the day of the race, his symptoms were considerable worse: He needed a walker just to get around. Silverman credits his neurologist and his wife for their support and encouragement as he completed his medical training. Now he uses his own health experience to help him treat and care for his patients with empathy. “As a 27-, 28-year-old student in medical school, you don’t always know what it’s like to suffer,” Silverman says.
Clinical Trials for Multiple Sclerosis
Clinical trials are an important part of determining if a drug or other form of therapy is safe and effective. People with MS are needed to participate in studies so that new and better disease-modifying drugs can be approved and made available to everyone. Although there are some potential risks involved in taking part in a clinical trial, there are many safeguards in place to protect participants.
How to Find a Clinical Trial
The U.S. National Institute of Health (NIH) keeps a database of the privately and publicly funded clinical studies, including multiple sclerosis studies. Even if you don’t choose to participate in a trial yourself, this database can keep you informed about the types of research being done on MS. But if you are interested in participating in MS research, talk to your neurologist about the potential risks and benefits of taking part in a study.
RELATED: MS Research and Clinical Trials
What to Consider Before Joining a Clinical Trial
Joining an MS clinical trial can be a big commitment. Although some trials might just require a short survey over the phone, others may involve frequent trips to a healthcare facility for blood tests or imaging studies. And while participating in a trial may give you access to a new treatment that’s not available anywhere else, there’s also a chance you could be given a placebo, or dummy treatment. It’s important to find out as much as you can about the level of commitment the trial will require and discuss the pros and cons with your family, friends, and healthcare provider before you volunteer.
Latest News and Research on Multiple Sclerosis
It’s estimated that as many as one million Americans are living with MS. To help raise awareness and money for research, a number of societies and advocacy groups have designated March Multiple Sclerosis Awareness Month. People can show their support by getting involved with a local MS event or by sporting an orange wristband or ribbon. In 2020, MS Awareness Week is March 8 to 14, and Awareness Day is May 30.
Editor’s Picks: Best-Of Roundups
Is it possible to be positive or even crack jokes when you’re dealing with MS fatigue or having trouble getting up out of your chair? Figuring out how to roll with the constant uncertainty of this incurable disease isn’t easy, and it helps to hear about how other people deal with it. One way to feel a little less alone (and have a few giggles while you’re at it) is to check out one of the many blogs, podcasts, and videos created by people with MS.
When the editors at Everyday Health review any product or service — even a blog! — we use our Wellness Code to determine what items to feature, based on their potential to improve your wellness