Kathleen Costello

Article / Updated 07-19-2022

All eight disease-modifying medications that are approved by the U.S. Food and Drug Administration (FDA) to treat MS have been shown to be effective for people who experience relapses. So, as long as you continue to have relapses, you’re still a good candidate for most, if not all, of these medications. However, the evidence is pretty strong that these medications have their greatest impact early in the disease, primarily by reducing inflammation in the central nervous system (CNS) and reducing the number and severity of relapses. If you don’t have relapses — that is, if you have primary-progressive MS (and have never had relapses) or secondary-progressive MS (and used to have relapses but no longer do) — your options are much more limited. Some of the drugs for multiple sclerosis (MS) currently under study will no doubt turn out to be safe and effective options. Meanwhile, Novantrone (mitoxantrone) is the only one of the eight medications that has been approved for people with secondary-progressive MS whether or not they continue to have relapses. And to date, no medication has been found to be effective for primary-progressive MS. That doesn’t mean that those of you with progressive disease are out in the cold, however. If your MS appears to be progressing significantly in spite of whatever treatments have already been tried, your neurologist may recommend a chemotherapy drug, such as Imuran (azathioprine), CellCept (mycophenolate mofetil), Cytoxan (cyclophosphamide), or methotrexate. Even though none of these medications has been specifically approved for use in MS, they appear to slow the disease course for some people. These medications — like Novantrone — are immunosuppressants that are also used to treat various forms of cancer or to prevent transplant rejection. Because these meds work by suppressing the entire immune system (rather than selected parts of the immune system as occurs with the other MS medications), they all carry specific types of risks. These risks include infection, impaired fertility, and an increased risk of certain types of cancer. More treatment options for progressive MS are being evaluated in clinical trials. If you’re interested in participating in a treatment trial, ask your neurologist if you would be a good candidate for any trials going on in your area. And check out the National MS Society website for more information about trials for progressive MS. You may also hear or read about bone marrow transplantation (also called autologous stem cell transplantation because the treatment involves stem cells from your own body), which is sometimes used in an effort to control very active, progressive MS. This is a procedure in which your immune system — including the immune cells that are thought to be causing damage in your central nervous system — is destroyed by chemotherapy or whole body radiation and is then replaced using immune stem cells from your bone marrow. This highly invasive treatment has been studied in small numbers of people with some success. Because this procedure poses significant risks and is still experimental, it may not be reimbursable by most insurance policies. The fact that the available medications aren’t particularly helpful for progressive MS doesn’t mean that you have no other options. On the contrary, this is the time to call in the troops. A healthcare team — particularly one at an MS care center that’s staffed by specialists — has a great deal to offer people who have more advanced disease.

Cheat Sheet / Updated 04-13-2022

Whether you've recently been diagnosed with multiple sclerosis (MS) or you've been living with this chronic illness for years, you want to live your life as fully and comfortably as possible. The good news is that you can! The symptoms of MS are manageable with medications, and rehabilitation strategies and treatments can reduce disease activity and slow progression. This Cheat Sheet provides insightful information about what you can do to stay active and feel your best.

Article / Updated 07-07-2016

Depending on your multiple sclerosis (MS) symptoms, the kind of work you do, and the environment in which you work, you’re bound to run into challenges along the way. Some of these challenges may be related to your symptoms, and others may have more to do with attitudes (yours and other people’s) about your MS. Being on the alert for these challenges will make it a lot easier for you to meet them head-on. For many kinds of jobs, some combination of good symptom management and reasonable job accommodations from your employer can keep you working for a long time. Approximately 40 percent of people with MS are still employed 20 years after their diagnosis. This means that lots of people are finding ways to work around their symptoms. Sometimes, however, your particular line of work and your MS simply don’t mix. If your job is a physical one, problems with weakness, balance, or coordination may make it impossible for you to be safe and productive. A construction worker, for example, may have relatively mild symptoms but may still be unable to do the job. If your work is all in your head, so to speak, then cognitive changes may interfere with your effectiveness as a lawyer or scientist (even though problems with walking may not). In other words, there are some job functions that are so dependent on particular abilities that even the slightest changes in those abilities interfere to a significant degree. When all is said and done, you know yourself and your situation better than anyone else does. You’re the only one who can decide what works best for you. If you’re pouring every ounce of energy into your job — leaving little or no energy for yourself or your family — continuing to work may not be in anyone’s best interest (yours or your family’s). MS, FMLA, and short-term disability If, on the other hand, your work is a major source of personal gratification, take the time to look for gratifying alternatives before leaving the workforce. Before you make any long-term decisions, it’s important to make sure that you’ve made full use of any available short-term leave options. For example: Find out if your company offers any kind of short-term disability policy that would allow you to leave work for a defined period of time. Check out the provisions of the Family and Medical Leave Act (FMLA) at www.dol.gov/whd/fmla. This act, which was passed in 1993, applies to any employer with 50 or more employees who live within a 75-mile radius of the work locations (and all public or government employers). The act requires these employers to provide up to 12 weeks of unpaid leave per year for qualified individuals who are dealing with a personal or family medical situation. The 12 weeks can be taken at one stretch or in chunks, with no impact on your job or health benefits. To be eligible for FMLA, you need to Be working for an employer who’s covered by this law Have worked with that employer for at least 12 months Have worked at least 1,250 hours in the past 12 months Decide what is right for you, your family, and your MS All in all, achieving balance in your life is important to your overall health and wellness. No decision is right and wrong in this situation. So think carefully about your options and go for the one that feels right for you and your family. If and when you hit the fork in the road — where you’ve exhausted the possible on-the-job accommodations and you’re unable to function in your current job because of your symptoms — you have two options: Make use of your talents in other types of employment Retire on disability and perhaps put your talents to work in some volunteer capacity Even though making changes in your work life can be difficult and painful, keep in mind that a fork in the road can also provide unexpected opportunities to try something new, explore a hidden talent, or go in a new direction. Take a look at the National MS Society’s publication, A Place in the Workforce, for some eye-opening info about what people with MS can do when they put their minds to it. Deciding to leave your job is a complex decision that needs to be made carefully and in consultation with the experts, such as your physician, your vocational rehab counselor, your rehab team, and anyone else whose expertise you value. The members of your healthcare team are your key allies in your employment efforts. For example: The neurologist and nurse can help you implement optimal symptom management strategies. Physical and occupational therapists can recommend the tools, mobility aids, and environmental changes you need to be effective in your job. A vocational rehabilitation counselor can help you identify strategies to stay in your job or sort out your options if you think a change is in order.

Article / Updated 03-26-2016

Your neurologist is the key member of your healthcare team. As a specialist in diseases of the nervous system, he or she provides treatment options to manage your MS and the symptoms it can cause. The neurologist can also help you engage other healthcare professionals on your team — the nurse, rehabilitation professionals, and mental health experts who can work with you to optimize your health, daily functioning, and quality of life. If you have a neurologist, keep these tips in mind to make your partnership as strong as possible. If you don’t, check out the first bullet to find a qualified specialist. Call the National MS Society (800-FIGHT-MS or 800-344-4867) for a list of neurologists in your area with MS expertise. For each visit to the neurologist, do the following: Be prepared to describe and prioritize problems and symptoms. Write down any questions you have so you don’t go home without the answers you need. To catch everything the doc says, bring your partner or a friend or a tape recorder. Make sure your doctor has an up-to-date list of all the medications (prescription and over-the-counter) and supplements you are taking. Take your medications as they have been prescribed for you and be sure to talk with your doctor about any concerns, problems, or side effects. If you don’t understand something, ask (the goal is to know more rather than less when you leave the doctor’s office). If you need a long consultation (to discuss family planning decisions, employment decisions, sexual dysfunction, and so on), schedule a separate appointment or phone call. Don’t wait for a crisis — see your MS doctor on a regular basis. If you feel you need or want a second opinion, don’t hesitate to get one.

Article / Updated 03-26-2016

A diagnosis of multiple sclerosis (MS) means developing a strong relationship with your doctors, nurses, and other healthcare professionals. They can work with you to manage your symptoms, slow the disease course, and cope with day-to-day challenges. The following are the important members of your healthcare team: Neurologist (or in some situations it may be a nurse practitioner or physician assistant): Diagnoses and treats MS and other neurologic diseases. Nurse: Provides education and support for all treatment issues. Primary care physician: Manages non-MS health issues and preventive care. Rehabilitation specialists: Promote independence, safety, and quality of life. For example, consider the following: Physiatrist: A physician specializing in rehabilitation medicine. Physical therapist: Promotes strength, mobility, and balance through exercise and training in the use of mobility aids. Occupational therapist: Promotes function in activities of daily living via energy management, assistive technology, and environmental modifications (may also treat cognitive symptoms). Speech/language pathologist: Diagnoses and treats problems with voice quality, speech, and swallowing (may also treat cognitive symptoms). Vocational rehabilitation counselor: Assists with career planning and retraining. Mental health professionals: Provide diagnosis, treatment, and support for a wide range of emotional issues, as well as education for stress management, goal-setting, and problem-solving strategies. Psychiatrist: A physician specializing in the diagnosis and treatment of mental health problems. Psychotherapist (psychologist, social worker, counselor): Provides counseling, information, and support for individuals and families. Neuropsychologist: Diagnoses and treats cognitive symptoms. Additional medical specialists: Provide specialized expertise in medical areas that may be impacted by MS or are of particular interest to folks with MS. Neuroophthalmologist: A physician specializing in neurologically related visual symptoms. Urologist: A physician specializing in urinary problems and male sexual function. *Obstetrician/gynecologist: A physician specializing in women’s reproductive care.

Article / Updated 03-26-2016

Some days you may feel pretty lousy when you have multiple sclerosis (MS). Other days you may feel okay or just so-so. If you’re oh-so-tired of feeling way below par, not to worry. You can improve the way you feel. These helpful tips can start you on your way to feeling healthy and well in spite of MS. Talk with your neurologist — as early in the disease process as you can — about treatment with one of the approved disease-modifying therapies to slow disease activity and progression and reduce further nerve damage as much as possible. Work with your MS team to manage your symptoms, avoid complications, and maintain your quality of life. If you’re feeling sad or down more often than not, contact your medical doctor or neurologist to make sure your mood gets the attention it deserves. Make time for rest, exercise, and healthy, balanced meals. See your general medical doctor routinely for physical exams and screening tests. Use the following effective cooling strategies: Avoid hot showers, hot tubs, and saunas. Limit your time in the hot sun. Exercise in a cool environment. Drink iced fluids Check out cooling vests and scarves. Call a friend — there’s no need to go it alone. Don’t wait for a crisis — tap the resources that are out there to help you. Stay focused on your goals — you don’t need to make a career out of MS.

Article / Updated 03-26-2016

When you have multiple sclerosis (MS), your energy may be in very short supply. Some days you feel like taking on the world and other days you feel like taking to your bed. You’re not alone. When you experience energy ups and downs, you can be proactive and manage your energy bank in the following ways to help you get through each day: Set priorities to ensure the best use of your daily energy supply. Make deposits (naps are great!) in addition to your withdrawals. Use your energy supply efficiently by doing the following: Using the right tools/mobility devices Making your home/work spaces accessible and convenient Asking for help when you need it Do the most difficult tasks when you have the most energy. Pace yourself instead of pushing yourself to the point of exhaustion. Talk to your doctor about symptoms that disrupt your sleep. Stay cool — literally and figuratively. Review your medications with your doctor (some have sleepiness or fatigue as a side effect, while others are prescribed to relieve it).

Article / Updated 03-26-2016

Well over a decade ago, a group of multiple sclerosis (MS) specialists — researchers and clinicians — got together to develop a common language for talking about MS. The group identified the following four disease courses, as illustrated in the figure: Relapsing-remitting MS (RRMS): MS begins as a relapsing-remitting disease about 85 percent of the time. RRMS is characterized by unpredictable periods of worsening (called relapses, exacerbations, or attacks) followed by remissions. A remission may be complete, meaning that the person returns to his or her pre-relapse level of functioning, or partial, meaning that some of the symptoms are likely to be permanent. Secondary-progressive MS (SPMS): Within about ten years, approximately 50 percent of those who are diagnosed with RRMS transition to SPMS, which is characterized by a steady (but not necessarily rapid) progression of disability without any remissions. Within about 25 years, a large majority of people make this transition. These folks generally have fewer or no relapses as time goes on. Primary-progressive MS (PPMS): For about 10 percent of people, MS progresses right from the beginning, without any relapses or remissions. PPMS seems to differ from RRMS and SPMS in terms of its underlying disease process — it has less inflammatory action going on in the brain and spinal cord and more tissue degeneration and destruction early on. These differences may be the reason that the current treatments for MS — which mainly target the inflammation — work much better in relapsing forms of MS than they do in PPMS. Progressive-relapsing MS (PRMS): A very small number of people (less than 5 percent) are diagnosed initially with a progressive form of the disease but then experience some relapses down the road. Even though these categories may seem nice and neat, they really aren’t. Within each of the groups is a tremendous variability, so don’t be surprised if your MS doesn’t quite fit any of the descriptions outlined here. For example, regardless of their disease course, some folks may experience very mild, stable MS (sometimes referred to as benign MS), while others may have a more rapidly disabling course. Unfortunately, no one can predict for sure whose MS is going to do what, which has led most MS experts to conclude that early treatment with one of the available medications is the best way to hedge your bets. So even if your MS appears benign at the outset, starting treatment early is your best protection against future progression. MS symptoms can involve virtually any sensory or motor function that’s controlled by the central nervous system. This means that the list of possible symptoms is long — including fatigue (by far the most common), visual changes, walking problems, and tremor; bladder and bowel problems, sexual difficulties, sensory changes, and speech and swallowing problems; and mood changes and problems with thinking and memory. Most symptoms tend to come and go, but some may come and stay. And they can range from mild to quite severe. The good news is that most people don’t develop all of these symptoms, and most of the symptoms are treatable. MS symptoms don’t show up in any particular order. Often, however, visual changes are what bring someone to the doctor. Then, once in the doctor’s office, it’s pretty common for someone to remember an episode of one or more of these symptoms during high school or college that came and went without anyone paying much mind. That’s why your doctor asks you so many questions and takes such a careful medical history when trying to arrive at a diagnosis.

Article / Updated 03-26-2016

Because multiple sclerosis (MS) is so complex, treatment involves several different strategies. Here are snapshots of several steps you can take to feel and function up to snuff: Use disease-modifying therapy. Your doctor will discuss with you whether you’re a candidate for treatment with one of the disease-modifying therapies. For example, if you have relapsing-remitting MS or secondary-progressive MS and are having intermittent relapses, you’re probably a candidate. These medications don’t cure MS, but they do reduce the frequency and severity of relapses. And, they probably slow the progression of the disease to some degree. Manage your relapses. Relapses (also called attacks or exacerbations) can be treated with corticosteroids if necessary. Even though the corticosteroids don’t have any long-term impact on the disease, they’re often effective in reducing the inflammation and bringing the relapse to an end more quickly. When you have a relapse, you and your doctor will decide whether the symptoms are interfering enough with your everyday activities to warrant treatment. And the rehab team can help you with exercise tips and other management strategies so you can get back in the swing of things as quickly as possible. Manage your symptoms. You and your healthcare team will work together to manage your symptoms effectively. Successful symptom management relies on effective teamwork — with you being a key player on your team. Your job is to report symptoms promptly, follow through with the treatment plan that the team develops for you, and provide feedback on what treatments do and don’t work for you. Remember, as your symptoms change, so will the strategies you use to manage them. Work with the rehabilitation team. Like the mechanics that keep your car finely tuned and road-ready, the rehab team helps you get in gear. Physical and occupational therapists can help you do what you want to do, comfortably and safely, and prevent yucky complications. They’re the experts when it comes to finding the right tools to help you do what you want to do. Speech/language pathologists deal with problems related to communication, swallowing, and cognitive functions like thinking, remembering, and processing information. Promote your overall health and wellness. Feeling your best involves more than just managing your MS. So, it’s important that you not focus on your MS to the exclusion of your general health. Unfortunately, being diagnosed with MS doesn’t protect you from the health problems that plague all mortals. This means that you have to get the proper nutrition, exercise, and preventive healthcare and you have to manage the stresses of your everyday life. Taking these important steps can help you feel healthy and well in spite of a chronic illness. Seek out emotional support. Living with MS isn’t a piece of cake. Even for those whose symptoms remain mild and manageable, the unpredictability alone is enough to stress people out. The fact is that adjusting to this intrusion in your life — and your family’s life — is an ongoing process that begins with your first symptoms and continues through all the changes that MS can bring.

Article / Updated 03-26-2016

Multiple Sclerosis (MS) is generally a relapsing-remitting disease, which means that symptoms come and go in an unpredictable way. So, don't make big decisions about any major life activities in the middle of a relapse or a particularly stressful week. Too many people end up leaving the workforce when they're first diagnosed, only to discover a few weeks or months down the road that they're feeling fine — but now they're unemployed. If you're considering leaving your job because of your MS, be sure to take advantage of all the legal protections that are available to you before thinking about disability retirement. The Americans with Disabilities Act (ADA) and other statutes are in place to help you stay employed as long as you want and are able to. Fun and recreation are just as important as work. Too often, people begin to give up activities they can no longer do easily or well. Before they know it, they've given up a lot of the things that make their life fun, full, and interesting. After you decide that it's okay to be creative, you'll find a way to do just about everything that's important to you. People with MS swim, ski, sail, play golf, go camping, and travel all over the world. Given the unpredictability of MS, you're probably wondering what you can do to safeguard your quality of life. The short answer is: You have to be a master at thoughtful planning and decision-making. Most folks don't enjoy second-guessing the future, but the best way to ensure your comfort and security down the road is to get all your ducks in a row now. In the meantime, here's the shorthand prescription for protecting your quality of life: Hope for the best, but plan for the worst. You aren't alone. Lots of people are with you on your MS path, including the scientists who continue to look for answers, the health professionals who want to partner with you in your care, and the voluntary health organizations, such as the National MS Society, that offer information and support.