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- Herausgeber: John Wiley & Sons
- Kategorie: Ratgeber
- Sprache: Englisch
Everyone's MS is different—learn the best way to manage yours
Multiple sclerosis (MS) is a chronic, unpredictable autoimmune disease that affects millions of people worldwide. It poses unique challenges for people with MS and their care partners because the symptoms (many of which are invisible to others) are so variable from day to day and month to month. Multiple Sclerosis For Dummies helps you and your loved ones understand the importance of early treatment and become familiar with all of the latest treatment options and therapies. You aren't alone—this compassionate guide includes resources for connecting with the right MS care provider, building a care team, managing your emotions and stress, and getting the support you need. Plus, you'll get tips for making lifestyle choices that help you along your MS path.
- Discover information on the latest diagnostic information, treatments, and symptom management strategies
- Learn why it's so important to take care of your mental health and emotional wellbeing as you treat your MS
- Get pointers for talking to MS care providers and your loved ones, advocating for yourself, and making decisions alongside your care team
- Find trustworthy books, websites, and community resources to expand your knowledge and improve your health
Multiple Sclerosis For Dummies is a great starting point for anyone facing a new MS diagnosis or looking for updated information. Partners and family members will also learn how to care for themselves while caring for the person they love.
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Seitenzahl: 707
Veröffentlichungsjahr: 2025
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Multiple Sclerosis For Dummies®
To view this book's Cheat Sheet, simply go to www.dummies.com and search for “Multiple Sclerosis For Dummies Cheat Sheet” in the Search box.
Table of Contents
Cover
Title Page
Copyright
Foreword
Introduction
About This Book
Foolish Assumptions
Icons Used in This Book
Beyond This Book
Where to Go from Here
Part 1: When MS Becomes Part of Your Life
Chapter 1: Meeting MS Face to Face
Introducing the Roles of Your Immune and Nervous Systems in MS
Exploring Possible MS Triggers
Understanding Why Your MS Is as Unique as Your Fingerprint
Reviewing the MS Treatment Menu
Recognizing How Your MS Affects Your Loved Ones
Minimizing the Impact of MS on Work and Play
Protecting Your Quality of Life
Chapter 2: So, What Do I Have? Getting a Diagnosis
Clarifying the Diagnostic Criteria
Getting Familiar with the MS Care Provider’s Diagnostic Tools
Understanding Why the Road to Diagnosis Can Have Detours
Chapter 3: You Have MS — So Now What?
First Things First: Sorting Out Your Feelings
Deciding on the Next Steps
Facing the Longer-Term Challenges of a Chronic Illness
Making Treatment and Lifestyle Choices That Work for You
Chapter 4: Getting the Right Players on Your Healthcare Team
Working with Your MS Care Provider
Rounding Up Other Key Players
Considering Comprehensive MS Treatment Centers
Part 2: Taking Charge of Your MS
Chapter 5: Developing a Plan to Take Charge of Your MS
Using Multiple Strategies to Manage MS
Tapping Your Creativity and Flexibility
Creating Your Own Treatment Template
Chapter 6: Managing the Disease Course and Treating Relapses
Managing the Disease Course
Managing Relapses
Feeling Confident about Your Treatment Decisions
Chapter 7: Managing Symptoms That Impact Sensation
Sidestepping Sensory Symptoms and Pain
Envisioning Solutions to Vision Problems
Recognizing Uncommon Sensory Symptoms
Chapter 8: Managing Symptoms That Impact Motor Function
Getting Around Walking Problems
Sorting Out Speech and Swallowing Problems
Taming Tremor
Chapter 9: Managing Invisible Symptoms
Foiling Your Fatigue
Managing the Emotional Ups and Downs
Handling Problems with Thinking and Memory
Eliminating Elimination Problems
Sizing Up Sexual Symptoms
Part 3: Staying Healthy and Feeling Well
Chapter 10: Paying Attention to Your Health — It’s Not All about MS
Enhancing Your Wellness By Paying Attention to the Whole You
Chapter 11: Making Healthy Lifestyle Choices
Upping Your Game with Healthy Lifestyle Behaviors
Optimizing Your Safety
Working on Your Unhealthy Habits
Making Healthy Eating a Priority
Improving Your MS and Overall Wellness with Exercise and Physical Activity
Increasing Your Chances of Success
Chapter 12: Handling Stress without Giving Up Your Life
Understanding the Relationship between Stress and MS
Recognizing Your Own Signs of Stress
Identifying Your Major Stresses
Creating Your Stress Management Plan
Part 4: Managing Lifestyle Issues
Chapter 13: Presenting Your MS Face to the World
Explaining Your MS to Others
Disclosing Your Diagnosis to a Prospective Partner
Communicating Your Needs
Chapter 14: Making MS a Part of the Family
Addressing Your Family Members’ Feelings about Your Diagnosis
Communicating Effectively with Adult Family Members
Keeping the Family Rhythm Going So Your MS Doesn’t Steal the Show
Building and Maintaining Healthy Partner Relationships
When Your Child Has MS
Chapter 15: And Baby Makes Three, Four, or More: Planning a Family around Your MS
MS and Babies: Here’s the Good News!
Considering Key Issues when Making Family-Planning Decisions
Strategies for Smart Decision-Making
Chapter 16: Parenting: It Wasn’t Easy Before You Had MS!
Keeping the Communication Lines Open
Parenting around Your MS Symptoms
Employing Effective Parenting Strategies
Chapter 17: Coping with Progressive Forms of MS
Scouting Out the Treatment Scene
Maintaining Your Quality of Life
Discovering Long-Term Care Services (Just in Case)
Calling All Care Partners — Your Needs Matter, Too
Part 5: Creating Your Safety Nets
Chapter 18: Keeping Your Place in the Workforce
Understanding the High Rate of Unemployment in MS
Counting the Reasons to Keep on Truckin’
Speed Bumps Ahead: Recognizing the Job-Related Challenges
Knowing Your Rights under the ADA
Thinking about Leaving Your Job
Chapter 19: Getting a Grip on Insurance
Considering Your Health Insurance Options — It’s All about Eligibility
Holding on to Your Health Insurance
Understanding the Ins and Outs of Your Health Insurance Plan
Filing Successful Insurance Appeals
Replacing Your Income with Disability Insurance
A Brief Word about Life and Long-Term Care Insurance
Chapter 20: Planning for a Future with MS
Preparing for the Worst while Hoping for the Best
Navigating the Planning Process: It’s as Easy as One, Two, Three
Part 6: The Part of Tens
Chapter 21: Ten MS Myths Debunked
MS Is Fatal
Everyone Eventually Needs a Wheelchair
Because There’s No Cure, There’s Nothing You Can Do about Your MS
People with MS Can’t Handle Stress
People with MS Shouldn’t Have Children
Having a Relapse Means Your Medication Isn’t Working
“Natural” Treatments Are Safer
No One Can Understand How You Feel
Scientists Aren’t Making Any Progress
If You Can’t Walk, Your Life Is Over
Chapter 22: Ten Tips for Care Partners
MS Is a “WE Disease,” Not a “ME Disease”
You Are Not Alone
Self-Care Isn’t Selfish
You Do Have Time for Self-Care
Acknowledge Your Own Losses as Well as Your Partner’s
Pay Attention to Your Own Mood
Be on the Lookout for Red Flags
Remember That the MS Symptoms You Can See Are Just the Tip of the Iceberg
Mobility Aids Are Tools for the Whole Family
Don’t Just Worry about the Unpredictable Future — Plan for It
Chapter 23: Ten Tips for Trouble-Free Travel
Tap the Right Resources
Calm Your Medical Concerns
Save Energy for the Fun Stuff
Check Ahead for Accessibility
Rent Accessible Vehicles
Keep Your Cool
Navigate Air Travel with Confidence
Safely Pack Your Prescriptions
Get Vaccinated
Look for Adventure
Glossary
Index
About the Authors
Connect with Dummies
End User License Agreement
List of Tables
Chapter 6
TABLE 6-1 MS Disease-Modifying Therapies
Chapter 10
TABLE 10-1 Medical Care Models
List of Illustrations
Chapter 1
FIGURE 1-1: A view of the inflammation and demyelination process.
FIGURE 1-2: Healthy and demyelinated axons.
FIGURE 1-3: The four disease courses in MS.
Chapter 2
FIGURE 2-1: A conventional MRI scanning machine.
FIGURE 2-2: How the lumbar puncture is administered.
Chapter 5
FIGURE 5-1: Sample treatment template.
FIGURE 5-2: Personal treatment template.
Guide
Cover
Table of Contents
Title Page
Copyright
Begin Reading
Glossary
Index
About the Authors
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Multiple Sclerosis For Dummies®, 3rd Edition
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Foreword
I am a neuroimmunologist with a special focus on helping people living with MS. My path to get here began with my mom’s MS, which was diagnosed before I was born. As a preteen, I became her primary “care partner” — the perfect description, I think, because we were on our own, taking care of each other. This was a different era in MS care, when there were no disease-modifying therapies, no MS specialty centers, no MRIs, and minimal hope for a bright future. Regardless of these circumstances, my mom remained resilient, determined, feisty, and hopeful as we managed the unpredictable years ahead. Without the medications we have today, my mom experienced multiple relapses followed by steady progression, and by the time I was 16, she needed to be in a care facility, with me visiting whenever I could. I lived on my own through the latter half of high school and then headed to college with an interest in science, but no specific direction.
While working in an emergency care setting during college, I decided I wanted to provide care to people with medical challenges, and I wanted to be the kind of doctor who treated the whole person, not just their illness. Having thought I would stay as far away as possible from neurology and MS, I discovered in medical school that that neuroimmunology was exactly where I belonged.
Since my mom’s experiences with MS in the 1970s and beyond, our knowledge of the disease has exploded. Had my mom been diagnosed today, her experiences — and mine — would have been very different, but I’m still glad that those experiences got me to the work I do. Today, I can tell my patients that their MS doesn’t define them, that the disease and its symptoms can be effectively managed, and that their lives can be full, satisfying, and active. And this book offers the perfect roadmap.
The authors’ knowledge, experience, and passion for MS care fill every page. As a neurologist, nurse practitioner, and psychologist, they provide you with a comprehensive path to health and wellness while living with MS. They recognize the uniqueness of each person’s experience with MS, whether you live with the disease or care for someone who does. And this book will guide you whether you’re dealing with many symptoms or just a few or whether you’ve just been diagnosed or have been living with MS for many years. Most importantly, this book gives you the information and resources you need to manage the disease and live the life you want to live, even if you have to do some of it differently than you originally envisioned. So go for it — and I wish you the best!
Scott D. Newsome, DO, MSCS, FAAN, FANA
Professor of Neurology
Division of Neuroimmunology and Neurological Infections
Johns Hopkins University School of Medicine
Introduction
Being diagnosed with multiple sclerosis (MS) is definitely a bummer, but living with it doesn’t have to be. This edition of Multiple Sclerosis For Dummies — like the ones that came before it — is all about how to live your life with MS without making a full-time job of it. You’ll come away more informed and more prepared no matter how your MS behaves.
If you’ve never heard of MS before and you want to know what may be in store, this book is definitely for you. If all you’ve ever heard about MS is the bad stuff, this book will give you a clearer view and a better outlook. We know this because, without realizing it, you’ve probably met several people at work, at the gym, or in your neighborhood who have MS. So, whatever image you currently have in your mind about MS, this book shows you how and why every person’s MS is different. Yours will be unique — and this book will help you find your way.
If you add our careers end to end, the three of us — a neurologist, a nurse, and a psychologist — have now worked with, and learned from, people with MS for a total of 136 years! We wrote this book as a team effort so we could send a loud and clear message that you’re not alone. Health professionals trained in neurology, nursing, psychology, rehabilitation medicine, and a variety of other disciplines, as well as voluntary organizations, such as the National Multiple Sclerosis Society, Can Do Multiple Sclerosis, the Multiple Sclerosis Foundation, and the Multiple Sclerosis Association of America are ready to help you every step of the way.
About This Book
Don’t worry: In this third edition of Multiple Sclerosis For Dummies, we’re not going to try to tell you everything there is to know about MS. Instead, we give you what you need in order to make educated choices and comfortable decisions — including new and updated info about medications and strategies to slow disease progression and manage MS symptoms, and recommendations for ways to stay healthy and well with MS, We provide lots of information that’s easy to access and easy to swallow regarding what happens in 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 up to snuff, and how you can protect yourself and your family against the long-term unpredictability of the disease. We also throw in useful tips, introduce you to the members of your healthcare team, and point you in the direction of a growing array of useful resources. And we even promise to make you chuckle once or twice along the way.
Feel free to pick and choose what you want to read — you don’t have to take a cover-to-cover approach if you’re more comfortable with a hop, skip, and jump style. Each chapter tackles a different aspect of living with MS so that you can zero in on the stuff that’s most relevant to you.
Foolish Assumptions
Even though no two people have MS in exactly the same way, we assume that you — our readers — still have quite a few things in common. We’ve written this book with these thoughts about you in mind:
You have MS or care about someone who does.
However much you already know about MS, you want to know more — in language that’s easy to access and easy to understand.
You’re looking for ways to manage your MS and the symptoms it can cause.
You want to be healthy, active, and productive in spite of whatever challenges MS is throwing your way.
You wish you had a crystal ball, but you’re willing to settle for some helpful suggestions on how to deal with the unpredictability of MS.
Icons Used in This Book
To make this book easier to read and simpler to use, we include some icons that can help you pick out the key ideas and points of information throughout the book.
This icon highlights shortcuts that help you conserve valuable resources, such as energy, time, and money.
When you see this icon, it tells you that the information that follows is essential and that you should keep it in mind as you deal with your MS.
This icon flags dangers to your health, safety, or general well-being.
This icon reminds you when it’s time to check in with your neurologist or another specialist on your healthcare team.
Beyond This Book
In addition to what you’re reading right now, this book also comes with a free, access-anywhere Cheat Sheet that discusses how to feel best with MS, how to manage your energy, how to partner with your healthcare provider to manage your MS, and more. To view the Cheat Sheet, simply go to www.dummies.com and type Multiple Sclerosis For Dummies Cheat Sheet in the Search box.
Where to Go from Here
This book is organized so that all you need to do is shut your eyes and point in order to find complete information about one aspect of MS or another. If you prefer the eyes-open method but aren’t sure where you want to start, we recommend Part 1. It gives you basic info about MS and how it’s diagnosed, as well as some tips for sorting out all of the feelings that an MS diagnosis can stir up. If you’ve already been there and done that, you may want to check out specific treatment strategies in Part 2, or discover ways to feel more bright-eyed and bushy-tailed in Part 3. If you’re wondering how MS may affect your relationships with the important people in your life, you can focus on Part 4. And if you’re someone who likes to get all your ducks in a row from the get-go (and even if you’re not), you can check out Part 5 for suggestions on how to feel securely prepared in spite of the unpredictability of MS. No matter where you choose to begin, begin now. Make it your priority to educate yourself about MS and the strategies you and your family members can use to live well in spite of it.
Part 1
When MS Becomes Part of Your Life
IN THIS PART …
Get the latest info about MS — what it is and what it isn’t.
Become familiar with the rules and tools MS care providers use to diagnose MS.
Develop strategies for living more comfortably with unpredictability.
Get acquainted with the MS treatment team.
Chapter 1
Meeting MS Face to Face
IN THIS CHAPTER
Exploring how MS affects your brain
Determining what triggers MS
Recognizing the uniqueness of your MS
Taking a peek at the available MS treatments
Understanding the impact of MS on your family and work life
Gearing up to keep your life on track
Because you’ve picked up this book, we’re assuming that your doctor has delivered the news that you have multiple sclerosis (MS). Or, perhaps they said that you may have this disease, or that you probably have this disease (which makes you wonder why you can’t get a clear answer). Whether you got the news yesterday or several months ago, you’re probably trying to figure out what it means for you, for your future, and for your family. In other words, you have about a zillion questions about what’s in store.
Chances are, the answers you’ve received so far haven’t been all that satisfying — mostly because MS still can’t be cured, no one knows what causes it, and no doctor can predict with any certainty how your MS is going to behave in the future. However, the good news is that the treatment options are expanding, and people with MS are busy getting on with their lives — and there is every chance that you will too.
In this chapter, which is an introduction to MS and an overview of what we cover in the rest of the book, we fill you in on the available MS info — including what scientists have been able to discover about the workings of this disease and what questions remain to be answered. We explain why your MS is different from everyone else’s, and we introduce you to the treatment strategies that can help you manage your MS. Finally, we glance at the ways that MS can affect life at home and at work, and we show you what you can do to ensure the best possible quality of life for you and the people you love.
Introducing the Roles of Your Immune and Nervous Systems in MS
Surprise! Even though MS is described as the most common neurologic disorder diagnosed in young adults, the problem doesn’t appear to originate with the nervous system. Instead, decades of research have pointed to the body’s immune system as the culprit. Some kind of malfunction in the immune system interferes with the functioning of the body’s nervous system, resulting in the symptoms commonly associated with MS. The current thinking is that the glitch is an autoimmune problem, which basically means that your body is mistakenly attacking and damaging some of its own healthy tissues and cells. We explain the autoimmune process in the section “What happens in MS” later in the chapter, but for now, understanding how the immune system is supposed to work when it’s healthy is important.
The immune system: Your body’s frontline defender
The immune system — which is a complex network of proteins, tissues, and circulating cells — is your body’s frontline defense in the fight against infection by viruses, bacteria, and other bad guys. When confronted with an infection, the immune system gears up to neutralize the foreign invader and make you healthy again.
In order for your immune system to do its job properly, it has to be able to distinguish between the good guys (the cells, tissues, and organs that make up your body) and the bad guys (any foreign invader, such as a virus or bacteria that doesn’t share your genes). And get this: If the hormones of pregnancy didn’t suppress it, a pregnant woman’s immune system is so powerful that it could reject the developing fetus (which shares only some of her genes). (Check out Chapter 16 to read more about how pregnancy hormones appear to affect MS.)
The nervous system: Your body’s CEO
The nervous system, which controls almost all bodily functions, is made up of neurons, each of which consists of a cell body and its long extension — the axon. And many axons are covered by a protective or insulating coating called myelin. The neurons are gathered into small- and large-sized bundles called nerves.
The system is basically divided into three parts: The central nervous system (CNS), which consists of the brain, spinal cord, and optic nerves, is the target of the immune system damage done in MS. The peripheral nervous system (PNS) includes the branching network of nerves and axons that connects the CNS to muscles, sensory organs, and glands in the rest of the body. The autonomic nervous system (ANS) controls vital functions such as heartbeat, digestion, and breathing automatically (so we don’t have to remember to breathe!).
MS is essentially a disease of the CNS.
The nervous system conducts electrical signals throughout the body to communicate these basic functions:
Motor signals: These signals, which move from the CNS through the PNS to muscles and other organs, control movement, strength, and other bodily functions.
Sensory signals: These signals go back to the CNS from the eyes, ears, skin, and other sensory organs, and they provide information about the environment from those organs.
Integrative signals: These signals travel from nerve cell to nerve cell within the nervous system and are thought to be responsible for many cognitive functions, such as learning, thinking, and memory (check out
Chapter 9
for information about cognitive changes in MS).
These electrical signals are like the current in an electrical wire: When everything is working fine, they travel long distances along the myelin-covered axons in the CNS, jumping from one axon to another as needed. The myelin (like the insulation around an electrical wire) is what helps speed the electrical signals on their journey and smooths out any bumps along the way.
What happens in MS
After you understand the role of the immune system and the nervous system, you can begin to understand how MS affects them. In autoimmune diseases like MS (and rheumatoid arthritis, Crohn’s disease, lupus erythematosus, and Type I diabetes, among others), the immune system loses the ability to distinguish the good guys from the bad guys, and so it starts attacking the normal tissues in the body. In MS, this autoimmune response targets the myelin coating around the axons in the CNS, the axons themselves, and the cells that produce the myelin — called oligodendrocytes.
The autoimmune attack happens in part because of a breakdown in the blood brain barrier (BBB) — the specialized blood vessels that protect the brain from invaders. The breakdown in the BBB allows immune cells that have been living harmlessly in your blood to travel into your CNS to attack the myelin and axons, which results in the symptoms associated with MS. The autoimmune process in MS follows these steps (see Figure 1-1):
The inflammation that occurs during an MS relapse (also called an attack or exacerbation) damages the BBB, allowing the movement of immune cells into the CNS. (Skip to
Chapter 6
for more info about MS relapses.)
Toxic substances are released into the CNS, which can increase inflammation and result in the breakdown of myelin (in a process called demyelination) and the axons, sometimes even affecting the nerve cell bodies.
Nervous system cells called astrocytes move into the locations where the damage has occurred, and they form scar tissue (giving rise to the name multiple sclerosis, which means multiple scars).
FIGURE 1-1: A view of the inflammation and demyelination process.
In addition to this acute process, it is now known that the immune system sets up shop inside the central nervous system and provokes a slower, more insidious type of damage — an underlying worsening that continues over a person’s lifetime with MS. Many MS specialists refer to this worsening as a smoldering process. This means that the underlying damage inside the CNS and the inflammatory process that starts outside the CNS are both occurring with varying degrees of severity in every person with MS.
The results of this autoimmune process aren’t all that pretty: The inflammation can cause swelling, which interferes with the conduction of signals in the nervous system. The demyelination results in a loss of insulating myelin around the neurons’ axons, which slows or interrupts nervous system conduction. The autoimmune process also causes axonal damage (transection) or axonal loss, which breaks the connections between the nervous system and parts of the body. (Figure 1-2 shows the steps involved in demyelination and axonal loss.) And finally, the smoldering process includes activation of microglia and other cells in the CNS that contribute to MS damage and progression.
FIGURE 1-2: Healthy and demyelinated axons.
This whole process results in the symptoms that we describe in Chapters 7, 8, and 9. (Flip to Chapter 6 to read about the treatments that can reduce the inflammation and slow the destructive process.)
Taking advantage of the body’s natural recovery process
The body has a natural capacity to heal some of the damage caused by MS. For example, partial healing occurs following each MS relapse. Here’s how it works: The inflammation that occurs during an MS relapse causes edema — the accumulation of fluids at the site of the damaged myelin (picture what happens when you sprain your ankle). Edema (swelling) compresses the myelin-coated axons and interferes with the transmission of nerve signals. As the inflammation and swelling disappear, and the relapse comes to an end, some of the axons begin to decompress and are able to function normally or close to normally again. The reduction of inflammation can happen through a natural healing process or can sometimes be speeded up with corticosteroid medications (which you can read about in Chapter 6).
In addition, the myelin coating that has been damaged by inflammation has some ability to recover (remyelinate) if the axon remains intact. This remyelination allows a person to recover some function. Check out the National MS Society website at https://pathwaystocures.nationalmssociety.org/pathways-to-a-cure/explore-pathways/restore for more information on myelin and current research efforts to stimulate this natural healing process.
The brain is also able to reroute messages to non-damaged areas (referred to as brain plasticity) so that function can be maintained or restored. Although this ability gradually diminishes, it helps people maintain their functional abilities.
After the nerve fiber itself has been damaged or severed, and scar tissue has formed, healing is much more difficult. Unfortunately, doctors haven’t yet found a way to repair damaged axons or to remove the scars. Researchers are focusing a lot of attention on how to promote this kind of repair. Check out the National MS Society’s website at https://www.nationalmssociety.org/understanding-ms/ms-research/research-news-progress/stem-cells for information on all the latest stem cell research.
Exploring Possible MS Triggers
Given that MS is an autoimmune disease, figuring out what actually triggers the immune system’s attack on the nervous system is important. Most scientists agree that no single virus or bacterium causes MS all by itself. They have also concluded that no single environmental or dietary factor is directly responsible for the disease. However, it now appears that exposure to the Epstein Barr virus (EBV) — the virus that causes mononucleosis — is a necessary but insufficient trigger in the development of MS. In other words, exposure to EBV sets the stage, but many other actors need to come into play for MS to occur. The exciting news is that EBV vaccines are in the works, with the hope that with a vaccine there will be far fewer people will develop MS in the future.
Currently, scientists believe that a combination of several factors — including gender, racial or ethnic, geographic, genetic, and lifestyle factors — interact with some type of viral or bacterial trigger to stimulate the autoimmune process. This means that when a person who has a genetic susceptibility to MS, and has previously been exposed to EBV, meets up with the environmental trigger or triggers, their immune system overreacts in a way that sets off the abnormal autoimmune process.
This sounds simple enough, but the question of why some people get MS and others don’t remains one of the great mysteries of this disease. 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.
Gender clues
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 three to four times more common in women than in men. However, prior to the onset of puberty, boys are as likely to get MS as girls (check out
Chapter 15
for more info about MS in kids).
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. (You can read more about the disease courses in the section “
Distinguishing the four disease types
” later in the chapter.)
Ethnic or racial clues
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 White people of northern European ancestry.
MS is much more common in Black women than previously thought — and may even be more common than in White women. MS is somewhat less frequent in Black men and Hispanic and Latinx individuals.
Asians develop MS less frequently than Whites 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.
Geographical clues
The geographical distribution of MS has been known for a long time: In general, the farther 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 two 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.
Climatic/meteorologic: Residents of the tropics have greater exposure to the sun and vitamin D, which may offer some protection against MS.
Each of these possible explanations is the subject of intensive investigation.
An interesting wrinkle in the geographical data — which no one can yet explain — suggests that timing may be the key. Data, particularly from Israel and South Africa, suggest that people who migrate from their birthplace before puberty take on the MS risk factor of their new home, whereas people who migrate after puberty maintain the risk level associated with their birthplace. Just remember that these are statistical statements that characterize large groups of people, not single people within that group. This means that these statements provide no kind of guarantee for you or your children. So, there’s no need to pack your bags and relocate to the tropics.
Genetic clues
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 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.
Lifestyle clues
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.
Childhood and adolescent obesity, which is known to be a risk factor for MS and obesity later in life, is also known to hasten disease progression.
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.
Separating out these lifestyle findings from other factors is difficult because none of them happen in isolation. Genetics and geography are also operating regardless of one’s smoking, sunning, or eating habits. So, in the meantime, flip to Chapter 11 for more info about ways healthy eating and lifestyle behaviors like exercise and physical activity, stress management, and quitting smoking that can have a positive impact on your MS.
Understanding Why Your MS Is as Unique as Your Fingerprint
Here’s something to think about: If you went to a large gathering of people with MS, chances are high that you wouldn’t meet anyone whose MS is just like yours. MS is so variable from one person to the next — even among people in the same family — that your experience with MS will be unique.
Even though the cause of this variability isn’t clear, it probably has to do with the genetic and geographic factors we talk about in the section “Exploring Possible MS Triggers” earlier in the chapter. In addition, the inflammatory process that damages myelin and axons can happen just about anywhere in the central nervous system, with the random targets resulting in different kinds of symptoms (check out the section “Scanning the possible symptoms” later in the chapter).
Distinguishing the four disease courses
In 2013, a group of MS specialists — researchers and clinicians — got together to revise the descriptions of the different ways that MS behaves over time. While MS is very individualized, there are characteristics and MRI findings that helped the group create descriptions of four disease courses. Check out Fig 1-3 to see how the MS disease courses evolve over time. The figure also includes radiologically isolated syndrome (RIS), which may occur even before a person experiences a clinically isolated syndrome but isn’t considered a disease course. RIS is found when an MRI done for some other reason (headaches or a head injury, for example) shows damage that looks like MS lesions but hasn’t produced any neurologic symptoms.
Clinically isolated syndrome (CIS):
Refers to the first symptom or event that a person experiences that is: related to the CNS; not explained by anything else; and looks like MS but does not fulfill the diagnostic criteria to be definitively diagnosed as MS. Because many people with CIS go on to be definitively diagnosed with MS, an MS disease-modifying therapy (DMT) (flip to
Chapter 6
for all the info about these medications) is often prescribed for CIS in order to reduce CNS inflammation and damage over time.
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. Relapses are usually associated with new areas of inflammation that can be seen on the MRI. Symptoms of a relapse may last a few weeks to a few months and then be followed by a remission. 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. People who have RRMS may worsen as a result of a relapse, which is referred to as
relapse associated worsening
(RAW).
Secondary-progressive MS (SPMS):
Within about ten years, some of the people who are diagnosed with RRMS transition to SPMS, which is characterized by a steady (but not necessarily rapid) worsening of functional ability with few or no relapses. When worsening occurs without relapses it is termed
progression independent of relapse activity
or PIRA. We now know that progression in MS may be occurring from the time of diagnosis (read about smoldering MS in the section
“What Happens in MS”
). However, early in the disease, the prominent features are inflammation and relapses.
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 (read more about them out in
Chapter 6
) — which mainly target inflammation — work much better in relapsing forms of MS than they do in PPMS.
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 while others may have a more rapidly disabling course (see Chapter 13 for more on dealing with advanced disease). 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 MS DMTs (refer to Chapter 6) is the best way to hedge your bets. So even if your MS appears mild at the outset, starting treatment early is your best protection against future progression.
FIGURE 1-3: The four disease courses in MS.
Scanning the possible symptoms
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: the tricky invisible ones like fatigue (by far the most common), bladder and bowel difficulties, changes in sexual feeling and function, mood changes, and problems with thinking and memory (Chapter 9); symptoms impacting motor function like weakness, spasticity, balance problems, tremor, and speech and swallowing difficulties (Chapter 8); and symptoms affecting sensation such as pain, vision changes, numbness and tingling, and impaired hearing and taste (Chapter 7).
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. (Flip to Chapter 2 for information about the diagnostic process.)
Reviewing the MS Treatment Menu
Reading about all the MS symptoms can definitely be an eye-opening experience. In fact, both your eyes and your mouth may be hanging wide open when you do. But try not to panic. You aren’t likely to experience every symptom described in this book. And with the help of your treatment team (flip to Chapter 4 for details), you can learn how to manage the symptoms that occur and take steps to control the disease as much as possible.
Because MS is so complex, treatment involves several different strategies, all of which are discussed in detail in Part 2. However, for now, here are snapshots of several steps you can take to feel and function up to snuff:
Use a DMT. Your MS care provider will discuss with you the (more than 20!) treatment options that are currently available and together you will decide which option best fits your needs, priorities, and lifestyle (flip to
Chapter 6
for details). These medications don’t cure MS, but they do reduce the frequency and severity of relapses, delay the transition in those with relapsing-remitting MS to secondary progressive MS, and delay or reduce the progression of the disease.
Manage your relapses. Although relapses (also called attacks or exacerbations) may be few and far between in a person who is taking a DMT, they can occur. Relapses can be treated with corticosteroids if the symptoms you experience interfere significantly with your everyday activities. Even though corticosteroids don’t have any long-term impact on the disease, they’re often effective in reducing inflammation and bringing the relapse to an end more quickly. (Check out
Chapter 6
for more on managing your relapses.) And the rehab team (see
Chapter 4
) 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 (see
Chapters 7
,
8
, and
9
). 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 with you, and provide feedback on what treatments do and don’t work for you. And 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 (check out
Chapter 4
for more on this team). Physical and occupational therapists can help you do what you want to do, comfortably, safely, and independently — 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 (
Chapter 11
) and you have to manage the stresses of your everyday life (
Chapter 12
). 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. So, Chapter 3 shows you how to deal with your new diagnosis and come to grips with a chronic illness. 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.
Fortunately, you don’t have to cope with this alone. Throughout this book, we suggest ways to get the support you need — from your healthcare team, from the MS advocacy organizations (Multiple Sclerosis Association of America, Multiple Sclerosis Foundation, National Multiple Sclerosis Society, and Can Do Multiple Sclerosis) and from those close to you. Check out Part 4 for suggestions on how to communicate with others about your MS and about how to deal with the emotional stresses that MS can cause for you and the people you love.
Recognizing How Your MS Affects Your Loved Ones
When you throw a pebble into a lake or stream, there’s always a ripple effect. Getting diagnosed with MS is similar because when one person in a family is diagnosed with MS, the entire family is affected by it. To help you adjust, we devote Chapter 15 to making MS a part of your family. Even though the symptoms are yours, your loved ones share everything from the impact of those symptoms on daily life to the financial pressures caused by MS. And like you, each family member is going to react to all of these challenges.
Talking about the tough stuff
One of the first hurdles for family members is figuring out how to talk comfortably — and honestly — with one another about the intrusion of MS in their lives. No one asked for MS, and no one likes it, so all of you are likely to feel sad, anxious, and maybe even a little resentful about the whole thing. Talking about these heavy-duty feelings can be difficult, particularly when you’re all worried about creating more upset or worry for people you love.
Family members also tend to have different ways of dealing with tough stuff. For example, you may be a talker while your partner is the strong, silent type. These different — and sometimes conflicting — coping styles are another barrier to communication. So, Chapter 15 offers you strategies for starting — and continuing — the tough conversations.
Keeping daily life on track
As you may have noticed, MS symptoms can disrupt the rhythms of daily life. You may find that you can’t do some things as well or as fast as you used to do them, and that you need to swap some chores and responsibilities with other family members. If you and your family members are finding that plans — especially outings and trips — are disrupted by pesky symptoms or unexpected relapses, check out Chapter 15 for ideas on how to keep the good times rolling and Chapter 23 for ten traveling tips to keep in mind.
Because MS symptoms are so unpredictable, you may all need to be a lot more flexible and creative than you have ever been before. Your goal as a family is to make sure that MS doesn’t interfere with your plans and priorities any more than absolutely necessary.
Maintaining healthy partnerships
Couples generally don’t know what they’re getting into with that “in sickness and in health” line. So, chances are, you’re probably learning from scratch how to adapt your partnership to the challenges of MS. In Chapter 15, we provide strategies to help you keep your partnership feeling comfortable and balanced. And in Chapter 8, we tell you how to manage the symptoms that can interfere with your sexual relationship. Regardless of the path your MS takes, the goal is to maintain a healthy, mutually satisfying partnership.
If you aren’t already in a committed relationship, you’re probably in the dating scene, which is challenging enough without MS symptoms getting in the way. If this sounds like your situation, turn to Chapter 14 for tips on how to talk about your MS with a prospective partner.
Becoming confident parents
When young adults are diagnosed with MS, some of the first questions they ask are about having kids. Young women want to know how a pregnancy will affect their MS and whether their MS will harm the baby. Both women and men have questions about how to plan their MS medications around conception, and women wonder about the use of MS medications during pregnancy and breastfeeding. Both men and women wonder how MS will affect their ability to be good parents.
Although Chapter 16 gives you all the details about conception, pregnancy, childbirth, and breastfeeding, here’s a sneak preview: Women and men with MS can be terrific parents of healthy, happy children. We suggest some important stuff to keep in mind when making your family plans — such as talking with your MS care provider well before trying to conceive, the unpredictability of MS, the depth of your financial resources, and the strength of your support system. And we recommend some strategies to help you and your partner come to the decisions that are right for both of you.
But we don’t stop with childbirth, because that’s over in a jiffy. Chapter 16 is full of parenting tips, including how to talk to your kids about MS, how to keep your MS symptoms from getting in the way of quality time with your kids, and how to keep MS from being the center of everyone’s attention.
Minimizing the Impact of MS on Work and Play
MS is generally a relapsing-remitting disease, which means that symptoms come and go in an unpredictable way. So, try not to make big decisions about any major life activities in the middle of a relapse or a particularly stressful time. Too many people end up leaving the workforce when they’re first diagnosed or during a subsequent relapse, only to discover a few weeks or months down the road that they’re feeling fine — but now they’re unemployed. (If stress is getting you down, flip to Chapter 12 for ways to manage it.)
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. Chapter 18 describes the provisions of the ADA, gives you pointers on how and when to disclose your MS at the workplace, and walks you through the steps for requesting accommodations from your employer.
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. We talk a lot in this book about getting comfortable with doing things differently. 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. Chapters 7, 8, and 9 describe the tools and strategies that can help you get around some of your symptoms, and Chapter 23 gives you ten tips for travel.
Protecting Your Quality of Life
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. We know that 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. Check out Chapter 19 for info on how to ensure that your insurance coverage is the best that it can be, and Chapter 20, which gives you tips on how to plan for an unpredictable future. In the meantime, here’s the shorthand prescription for protecting your quality of life: Hope for the best, but plan for the worst.
