The following tips, tools, and resources can help you to live well with multiple sclerosis.
Diet for MS
How food can improve or worsen various chronic illnesses is a growing area of research. Although some people with MS may experience symptom relief when they eliminate or add certain foods to their diet, there’s no evidence yet that any particular diet can affect 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 that’s particularly true if you have MS. Obesity can increase your risk of fatigue and depression, and obesity in children and teens has been associated with an increased risk of MS later in life. RELATED: Healthy Eating Habits for Multiple Sclerosis
Exercising With MS
Although the fatigue and pain that often comes with MS can make physical activity difficult, exercise 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. RELATED: Functional Exercise for Multiple Sclerosis: Advice From a Physical Therapist 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 you don’t overdo it. A consistent program that builds your strength and stamina can actually help reduce fatigue in the long run. RELATED: How to Exercise With MS: Advice From a Physical Therapist Taking measures not to get overheated during exercise is also important for individuals with MS, because getting too hot can cause MS symptoms to worsen. Some options for avoiding overheating include exercising in an air-conditioned environment, exercising outside during the cooler parts of the day, and taking breaks to cool off during workouts.
Managing Your Prescriptions for MS
When it comes to medication to treat MS, there are more options than ever before — currently, there are 20 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. RELATED: 10 Key Questions About Multiple Sclerosis Drugs
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, an 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. Too much vitamin D can be toxic and cause serious side effects, so 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 study results on the effectiveness of the herb for MS memory loss have been mixed, 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 there’s no proof that green tea helps MS symptoms, it is rich in antioxidants and other healthy compounds.
RELATED: Natural Remedy Dos and Don’ts for Multiple Sclerosis 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. RELATED: Can Essential Oils Help Manage Multiple Sclerosis? 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. RELATED: Can Turmeric Help Manage Multiple Sclerosis? 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. RELATED: Can Apple Cider Vinegar Help With Multiple Sclerosis?
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, 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.
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, in which four pegs connect to the main shaft. Some people 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, rollators (as the name suggests) 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.
Some people with MS resist or put off using a walking aid, but it can actually improve your independence and take some of the stress out of getting from here to there. RELATED: All About Assistive Devices for MS Mobility If you have MS, whether 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 choice; many people decide to use a wheelchair for certain activities or environments but 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 avoid using a wheelchair, it can provide freedom and new opportunities for activities that aren’t feasible with a cane or a walker.
Traveling With MS
You might think that because MS can flare up unexpectedly amid stress, fatigue, heat, or an infection, 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 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. 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, ask your primary care doctor, or use the “Find Doctors & Resources” tool from the National Multiple Sclerosis Society. RELATED: How to Find a Neurologist Who Treats Multiple Sclerosis In addition to your neurologist, you may consult with several 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 teach you exercises to increase flexibility and strength and improve your 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.
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 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 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 find sources of social and emotional support by going online to email or live chat with an MS Navigator from the National Multiple Sclerosis Society. RELATED: Depression, Anxiety, and MS: What’s the Connection?
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. RELATED: 7 Strategies for Taking Control of MS Anxiety
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 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 back burner, 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 great relationships with their “next of kin,” or perhaps their family members 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. RELATED: How to Be a Friend to a Person With MS
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. RELATED: Your Spouse Was Diagnosed With MS. Now What? 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 medications 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 were 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. Trish Palmer, a traveling nurse, didn’t want to accept help or support from her live-in boyfriend when she 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 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. RELATED: How to Have a Healthy Sex Life When You Have Multiple Sclerosis 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 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. RELATED: Why a Sex Therapist Belongs on Your MS Care Team
Disease-modifying drugs, which can prevent acute MS attacks, or relapses, and slow disease progressionCorticosteroids, which are used to help control severe symptoms in the event of a relapseDrugs to treat symptoms of MS, such as pain, walking difficulty, 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 (ocrelizumab), 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 a growing number of drugs approved to treat “active” SPMS, meaning the person still experiences relapses. Researchers are working on developing a therapy that will 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.
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. Talk with your doctor about medication costs, and consider a lower-deductible insurance plan. Your pharmacist may also be able to help you find programs or strategies to lower your drug costs. RELATED: Out of Pocket Costs Are Up Sharply for People With MS
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, says Lauren Strober, PhD, a senior research scientist at 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. RELATED: Multiple Sclerosis at Work: Know Your Options Many people with MS find that they can stay 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 workstation, or even modifying your 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) when they’re no longer able to work. 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. Reasons for leaving include MS symptoms such as fatigue, difficulty walking or moving around, weakness, and cognitive impairment, as well as having an unpredictable workload and feeling a lack of support from employers and colleagues. SSDI is a cash benefit for people who have worked long enough, have a medical condition that prevents them from working for at least 12 months, and meet the Social Security Administration’s definition of a disability. There are screening tools to help you know what you might qualify for, as well as a calculator to help determine your monthly benefit.
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 work-arounds to stay active as an artist and a community activist. Read Lydia’s story.
Rachel Haddad: Diagnosis Leads to Healthier Living
Rachel was in her late twenties and working as a middle school math teacher when she was diagnosed with MS in 2018. She quickly turned to exercise as a way to feel better physically and emotionally and ultimately decided to become a certified personal trainer so she could help others. She now offers exercise and healthy food advice online at Chronic Movement. Read Rachel’s story.
Virginia Reese: Creating Community for Black Women With MS
When Virginia Reese was diagnosed with MS in 2012, she faced all the same questions that anyone with MS faces. But she also had another question: Am I the only Black woman with MS? A little research revealed the answer was no. Virginia’s response was to start a support community for Black women living with MS, then to create the nonprofit We Are ILL to continue to provide support and education, raise awareness, and encourage diversity in MS clinical trials. Read Virginia’s story.
How to Find a Clinical Trial
The U.S. National Institutes of Health (NIH) keeps a database of 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 Resources Another way to participate in MS research is to join an MS registry such as iConquerMS or NARCOMS. iConquerMS is an initiative of the Accelerated Cure Project and is funded by PCORI (Patient-Centered Outcomes Research Institute), while NARCOMS is sponsored by the Washington University School of Medicine in St. Louis, in partnership with the Consortium of Multiple Sclerosis Centers. The idea behind both is that collecting information from many people with MS about the effects of their disease and its progression over time speeds the pace at which researchers can understand the disease and identify potential treatments. Participation is free.
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 providers before you volunteer. RELATED: Multiple Sclerosis (MS) Awareness Month: March 2021 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. RELATED: 12 Popular MS Blogs to Check Out in 2021 RELATED: 10 Inspiring Multiple Sclerosis Instagram Accounts You Have to Follow
