Multiple Sclerosis For Dummies book cover

Multiple Sclerosis For Dummies

By: Rosalind Kalb and Barbara Giesser Published: 05-08-2012

Your trusted, compassionate guide to living with MS

Being diagnosed with multiple sclerosis (MS) doesn't mean your life is over. Everyone's MS is different and no one can predict exactly what yours will be like. The fact is, lots of people live their lives with MS without making a full-time job of it.

Multiple Sclerosis For Dummies gives you accessible, easy-to-understand information about what happens with MS—what kinds of symptoms it can cause, how it can affect your life at home and at work, what you can do to feel and function better, and how you can protect yourself and your family against the long-term unpredictability of the disease. You'll learn how to make treatment and lifestyle choices that work for you, what qualities to look for in a neurologist and the rest of your healthcare team, how to manage fatigue, the pros and cons of alternative medicine, why and how to talk to your kids about MS, stress management strategies, your rights under the Americans with Disabilities act, and so much more.

  • Covers major medical breakthroughs that slow the progression of the disease and improve quality of life for those living with MS
  • Helps those affected by MS and their family members understand the disease and the latest treatment options
  • Helpful and trusted advice on coping with physical, mental, emotional, and financial aspects of MS

Complete with listings of valuable resources such as other books, websites, and community agencies and organizations that you can tap for information or assistance, Multiple Sclerosis For Dummies gives you everything you need to make educated choices and comfortable decisions about living with MS.

Articles From Multiple Sclerosis For Dummies

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191 results
191 results
Multiple Sclerosis For Dummies Cheat Sheet

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.

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When Your Job and Your MS Don’t Mix

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.

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Partner with Your Neurologist to Battle Multiple Sclerosis

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.

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A Snapshot of Your Healthcare Team When You Have MS

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.

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Ways to Feel Your Best When You Have Multiple Sclerosis

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.

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Hints to Managing Your Energy Bank with 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).

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Disease Courses and Symptoms of Multiple Sclerosis

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.

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Treatment Options for Multiple Sclerosis

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.

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Minimize the Impact of Multiple Sclerosis on Work and Play

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.

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What Factors Might Trigger Multiple Sclerosis?

Article / Updated 03-26-2016

Most scientists agree that no single virus or bacterium causes multiple sclerosis (MS) all by itself. They have also concluded that no single thing in the environment or in a person’s diet is directly responsible for the disease. Currently, scientists believe that the disease is caused by a combination of several factors — including gender, racial/ethnic, geographic, genetic, and lifestyle factors that interact with an infectious trigger of some kind (for example, one or more viruses or bacteria) to stimulate the autoimmune process. When a person with a genetic susceptibility to MS meets up with environmental triggers, his or her immune system overreacts in a way that sets off the abnormal autoimmune process. Why some people get MS and others don’t remains a mystery. Solving this mystery is important because identifying the factors that make some people susceptible to MS and others not would help scientists figure out the cause of MS. And identifying the cause would make it a whole lot easier to find more effective treatment and, eventually, a cure. Multiple sclerosis: Gender factors The fact that MS doesn’t occur equally in women and men has long piqued the curiosity of scientists and physicians. It turns out that some interesting differences exist between the sexes (in regard to MS, that is) that may provide important clues to the cause of MS: MS is two to three times more common in women than in men. However, prior to the onset of puberty, boys are as likely to get MS as girls. Men tend to develop MS at a later age than women do, and they’re more likely than women to be diagnosed with primary-progressive MS. Multiple sclerosis: Ethnic or racial factors MS isn’t unique to one racial or ethnic group, but certain groups are much more susceptible than others. Scientists are using the following clues to help themselves understand the genetic and environmental factors that may be causing these group differences: MS is most common among Caucasians of northern European ancestry. African-Americans and Hispanics develop MS half as often as Caucasians. Asians develop MS less frequently than Caucasians and generally have different types of symptoms. MS is rare (or unheard of) in pure Africans, Inuits, and some isolated populations around the world that have never mingled with other groups. Multiple sclerosis: Geographical factors The geographical distribution of MS has been known for a long time: In general, the further you live from the equator, the greater your chances are of developing MS. Like a lot of other aspects of MS, no one knows why this is true, but here are some possible explanations: Genetic/ethnic: Residents in the temperate areas of the world (except certain groups like the Inuits) tend to be of northern European descent. Climatatic/meteorologic: Residents of the tropics have greater exposure to the sun and vitamin D, which may offer some protection against MS. Infectious: Certain types of infectious agents may be more common in temperate areas of the world. Each of these possible explanations is the subject of intensive investigation. Multiple sclerosis: Genetic factors MS isn’t an inherited disease. However, the evidence is quite strong that a genetic factor contributes to a person’s risk of developing MS. The following facts point to a genetic component: Approximately 20 percent of people with MS have a close or distant relative with MS. The risk for someone who has one close relative with MS is 3 to 5 percent (compared to less than 1 percent in people without a relative with MS). For a person in a multiplex family — which has several members with MS — the risk of developing MS is even higher. Keep in mind, however, that even within the same family, close relatives can experience different disease courses, symptoms, and levels of disability. If one identical twin develops MS, the risk for the other twin is about 30 percent — proving that the disease isn’t directly inherited. Because identical twins share identical genetic traits, the risk would be 100 percent if genetics told the whole story. Multiple sclerosis: Lifestyle factors You’ve probably asked yourself (and your doctor) a hundred times what you did — or didn’t do — to cause your MS. Just remember that it’s clear from the study of geography, ethnicity, and genetics that the cause of MS — whatever it turns out to be — isn’t anything simple or direct. You didn’t do anything to cause MS to happen. However, here are some intriguing findings related to lifestyle: Even though exposure to sunlight and vitamin D is primarily determined by how close to the equator a person lives, it may also be related to time spent outdoors. One study found that people who got extra vitamin D from a daily multivitamin were at a lower risk for MS. Some studies have suggested that dietary factors may play a role in determining a person’s susceptibility to MS. For example, it has been suggested that Inuits don’t get MS because of their fish-heavy diet. Several studies have suggested that smoking increases a person’s risk of developing MS as well as the risk for disease progression, but no one has a clue why this may be true. So, if you’re looking for yet another reason to quit smoking, its possible relationship to MS is a good one.

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