Multiple Sclerosis For Dummies

by Rosalind Kalb, Barbara Giesser, Kathleen Costello

Overview

Need to know more about MS? This friendly, authoritative guide gives you expert advice on making personal treatment choices, managing symptoms, staying healthy, and maximizing your health insurance options - as well as how to deal with relapses and complications so you can keep your life on track. Discover how to: Get an accurate diagnosis, Assemble your healthcare team, Cope with advanced symptoms, Enjoy family life with MS, Request accommodations at work, Expalin MS to others.

Product Details

ISBN-13:	9781394300921
Publisher:	Wiley
Publication date:	03/11/2025
Edition description:	3rd ed.
Pages:	400
Product dimensions:	6.00(w) x 1.25(h) x 9.00(d)

About the Author

Rosalind Kalb, Ph.D., Barbara Giesser, MD, and Kathleen Costello, ANP-BC, have over 80 years' combined professional experience in working with people living with multiple sclerosis. For each of them, MS was, is, and will be their chosen career.

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Table of Contents

Foreword     xix
Introduction     1
About This Book     1
Conventions Used in This Book     2
What You're Not to Read     2
Foolish Assumptions     2
How This Book Is Organized     3
When MS Becomes Part of Your Life     3
Taking Charge of Your MS     3
Staying Healthy and Feeling Well     4
Managing Lifestyle Issues     4
Creating Your Safety Nets     5
The Part of Tens     5
Appendixes     5
Icons Used in This Book     6
Where to Go from Here     6
When MS Becomes Part of Your Life     7
Meeting MS Face to Face     9
Introducing the Roles Your Immune and Nervous Systems Play in MS     10
The immune system: Your body's frontline defender     10
The nervous system: Your body's CEO     10
What happens in MS     11
Taking advantage of the body's natural healing process     13
Exploring Possible MS Triggers     14
Gender clues     14
Ethnic or racial clues     15
Geographical clues     15
Genetic clues     16
Lifestyleclues     16
Understanding Why Your MS is as Unique as Your Fingerprint     17
Distinguishing the four disease types     17
Scanning the possible symptoms     19
Perusing the MS Treatment Menu     19
Recognizing How Your MS Affects Your Loved Ones     21
Talking about the tough stuff     21
Keeping daily life on track     22
Maintaining healthy partnerships     22
Becoming confident parents     22
Minimizing the Impact of MS on Work and Play     23
Taking Steps to Protect Your Quality of Life     24
So, What Is it, Doc? Getting a Diagnosis     25
Clarifying the Diagnostic Criteria     25
Getting Familiar with the Neurologist's Diagnostic Tools     27
Medical history     28
Neurologic exam     28
Various medical tests     30
Identifying a clinically isolated syndrome     35
Understanding Why the Road to Diagnosis Can Be Full of Twists and Turns     36
You've Been Diagnosed - So What's Next?     37
First Things First: Sorting Out Your Feelings     37
Shock: "This can't be happening"     38
Denial: "This isn't happening"     38
Confusion: "Why me?"     39
Anxiety: "What's going to happen to me?"     39
Anger: "Why can't you fix what's happening to me?"     40
Relief: "Thank goodness - I thought it was something worse!"     40
Deciding on the Next Steps     41
Catch your breath before making any major changes or decisions     42
Have a heart-to-heart conversation with your neurologist about treatment     42
Begin talking about MS with the people in your life     42
Make a commitment to your health     44
Facing the Longer-Term Challenges of a Chronic Illness     44
The how-to of healthy grieving     45
Living with unpredictability     47
Making Treatment and Lifestyle Choices That Work for You     50
Minimizing the stress of decision-making     50
Getting the professional help and personal support you need     51
Creating Your Healthcare Team     53
Working with Your Physician     53
Finding a neurologist with the qualities you value     54
Establishing a pattern of routine care     56
Making the most of your doctor visits     56
Knowing when to call in the MS specialist     58
Getting a second opinion     59
Rounding Up Other Key Players     60
The nurse for education, guidance, and support     60
The rehabilitation specialists to help you keep on truckin'     61
The mental health specialists to help you keep your head on straight     63
The general medical doctors     65
Considering Comprehensive MS Treatment Centers     65
Taking Charge of Your MS     67
Developing Your Management Plan to Take Charge of Your MS     69
Using Multiple Strategies to Manage MS     69
Modifying the disease course     70
Managing acute relapses     70
Taking charge of your symptoms     71
Enhancing function through rehabilitation     71
Providing psychosocial support     72
Taking care of your health     72
Tapping Your Creativity and Flexibility     73
Creating Your Own Treatment Template     74
Managing the Disease Course and Treating Relapses     77
Managing the Disease Course     78
Understanding the whys and wherefores of early treatment     78
Getting familiar with the immunomodulators     79
Turning to immunosuppressants     85
Setting realistic expectations for the DMTs     86
A word about primary-progressive MS     87
Managing Relapses     88
Defining a relapse     88
Treating an acute relapse     90
Getting Comfortable with Your Treatment Decisions     93
Managing Fatigue, Walking Problems, Visual Changes, and Tremor     95
Foiling Your Fatigue     96
Identifying and dealing with the causes of fatigue     96
Managing your energy bank to help put your sleepiness to bed     101
Envisioning Solutions to Vision Problems     102
Managing visual symptoms     102
Exploring longer-term management strategies     106
Getting Around Walking Problems     106
Addressing the sources of the problem     106
Using aids to take charge of your mobility     110
Taming Tremor     113
Handling Problems with Bladder and Bowel Function, Pain, Sex, and Speech and Swallowing     115
Eliminating Elimination Problems     115
Managing your bothersome bladder     116
Dealing with your bowel symptoms     119
Sizing up Sexual Symptoms     122
Identifying the changes you may be experiencing     122
Silence isn't golden: Talking is the first step     124
Treating your sexual symptoms     126
Sidestepping Sensory Symptoms and Pain     130
Sorting out Speech and Swallowing Problems     133
Speech and voice problems: Articulating the facts     133
Watching out for swallowing problems     134
Getting Your Head around Problems with Thinking and Mood     137
Handling Problems with Thinking and Memory     137
Defining cognition     138
Understanding how MS can affect your cognition     138
Deciding when an evaluation is in order     141
Knowing what to expect during an evaluation     142
Identifying treatment options     143
Employing practical strategies for managing daily cognitive challenges     144
Managing the Emotional Ups and Downs     145
Controlling mood swings     146
Getting a handle on uncontrolled laughing or crying     147
Dealing with severe depression     148
Considering Complementary and Alternative Medicine     153
Defining CAM     154
Understanding the Allure     155
Putting CAM to the Test     155
Understanding the role of the FDA     156
Sorting out the wheat from the chaff     156
Identifying CAM Interventions That May Be Useful in Managing MS Symptoms     158
Herbs, vitamins, and other CAM options that go into the body     158
Exercise, prayer, and other CAM options done independently or in a class     160
Acupuncture, massage, and other CAM options performed by a practitioner     161
Becoming a Cautious Cam Consumer     162
Staying Healthy and Feeling Well     165
Paying Attention to Your Health - It's Not All about MS     167
Enhancing Your Wellness by Paying Attention to the Whole You     167
Scheduling Routine Checkups to Protect Your Health     168
Making Healthy Eating a Priority     169
Taking MS into account when planning your menu     170
Battling the barriers to healthy eating     171
Improving Your MS and Overall Wellness with Exercise     172
Overcoming the hurdles     173
Exercising your options     174
Maximizing your comfort and safety during exercise     176
Increasing Your Chances of Success     177
Handling Stress without Giving Up Your Life     179
Understanding the Relationship between Stress and MS     179
Recognizing Your Own Signs of Stress     180
From sweaty palms to pounding hearts: Knowing your physical signs of stress      180
Anxiety and irritability: Knowing your emotional signs of stress     181
Identifying the Major Stresses in Your Life     182
Dealing with the devil: Job stress 101     182
Handling family stress with grace and composure     183
Controlling the uncontrollable: Managing your MS stress     183
Developing Your Stress Management Plan     184
Figuring out your priorities     185
Setting realistic goals     185
Cutting yourself some slack     186
Taking some practical steps     186
Tapping available resources     188
Zoning in on your "MS-free zone"     188
Practicing stress management techniques     189
Coping with Advanced MS     191
Scouting Out the Treatment Scene     191
Understanding your disease-management options     192
Exploring ways to feel and function at your best     194
Taking steps to prevent unnecessary complications     195
Maintaining Your Quality of Life     197
Holding on to what's important to you     197
Stay in touch: Preserving your connections with other people     198
Establishing goals and enjoying the satisfaction of meeting them     198
Keeping your self-image well-polished     199
Finding your "MS-free zone"     199
Helping yourself by helping someone else     200
Discovering Long-Term Care Services (Just In Case)     201
Defining long-term care     201
Getting help in your home     202
Looking into adult day care     203
Identifying assisted living options     204
Considering nursing home care     204
Important Tips for Caregivers     205
Managing Lifestyle Issues     207
Presenting Your MS Face to the World     209
Explaining Your MS to Others     209
Providing the basics     210
Dealing with common reactions     211
Remembering that MS is part of you but not all of you     214
Disclosing Your Diagnosis to a Prospective Partner     215
Communicating Your Needs     218
Giving clear messages     218
Staking out your independence     219
P.S. The doctor can't read your mind either     220
Making MS a Part of the Family     221
Addressing Your Family Members' Feelings about Your Diagnosis     221
Communicating Effectively with Adult Family Members     223
Recognizing communication barriers     223
Getting the ball rolling toward more open communication     224
Keeping the Family Rhythm Going so Your MS Doesn't Steal the Show     227
Coping with the direct and indirect costs     228
Managing energy and time     228
Establishing family priorities     230
Problem-solving: Many heads are better than one     230
Building and Maintaining Healthy Partner Relationships     231
Making time for each other     231
Keeping the intimacy alive     232
Maintaining a balanced partnership     233
What to do when one partner can't participate in joint activities     233
Turning a caregiving relationship into a care partnership     234
When Your Child Has MS     235
Helping your adult child with MS     235
Young children and teens get MS too     237
And Baby Makes Three, Four, or More: Planning a Family around Your MS     241
MS and Babies: Here's the Good News!     241
Fertility isn't affected by MS     242
Pregnancy hormones reduce disease activity     242
Pregnancies don't increase a woman's long-term disability level     243
Childbirth isn't a piece of cake for anyone but women with MS do just fine      243
Parents with MS have healthy babies     244
Breastfeeding is definitely an option     244
Considering Key Issues when Making Family-Planning Decisions     245
Minding your medications     245
Remembering that babies don't stay babies very long     246
Facing the uncertainties: The future doesn't come with guarantees     247
Strategies for Smart Decision-Making     247
Consult your MS doctor     247
Evaluate your financial situation     248
Take a good look at your teamwork     248
Check out your support network     249
Have a heart-to-heart with your partner     249
Talk to other parents living with MS     249
Remember that your plans can change     250
Parenting: It Wasn't Easy Before You Had MS!     251
Keeping the Communication Lines Open     252
Telling the kids about your MS makes good sense     252
Sharing info with your children when secrecy is important     254
Finding ways to broach the big issues     255
Explaining those pesky invisible symptoms     256
Parenting around Your MS Symptoms     258
"I'm so tired that I'm in bed before they are!"     258
"How can I be a good dad if I can't even play ball?"     259
"How can I discipline 'em if I can't catch 'em?"     261
Employing Effective Parenting Strategies     262
Call a spade a spade: Let MS take the blame when it needs to     262
Polish up your creativity and flexibility     262
Call on your support network     263
Remember, MS isn't always to blame - other people's teenagers are a pain too     263
Handle little problems before they get bigger     264
Allow kids to be kids     265
Creating Your Safety Nets     267
Keeping Your Place in the Workforce     269
Understanding the High Rate of Unemployment in MS     269
Counting the Reasons to Keep on Truckin'     270
Speed Bumps Ahead: Recognizing the Job-Related Challenges     271
When symptoms get in the way     271
When attitudes get in the way     272
Knowing Your Rights under the ADA     275
Disclosing your MS in the workplace     275
Understanding the terms used in the law     277
Requesting reasonable accommodations     278
Calling in the EEOC     279
Thinking about Leaving Your Job     280
Exhausting your short-term leave options      280
Looking into long-term disability options     280
Making the choices that are right for you     282
Getting a Grip on Insurance     283
Considering Your Health Insurance Options - It's All about Eligibility     283
Employment-based insurance programs     284
Public health insurance programs     284
Self-employment options     285
Options if you don't have health insurance     285
Keeping a Tight Hold on Your Health Insurance     286
Continuing coverage with COBRA     286
Protecting your coverage with HIPAA     289
Seeing COBRA and HIPAA work as a team     290
Understanding the Ins and Outs of Your Health Insurance Plan     290
Filing Successful Insurance Appeals     292
Check your coverage     292
Confirm why coverage was denied or was less than expected     292
File an appeal     293
Replacing Your Income with Disability Insurance     293
Commercial disability insurance     294
Public disability insurance: SSDI     295
A Brief Word about Life and Long-Term Care Insurance     296
Planning for a Future with MS     297
Preparing for the Worst While Hoping for the Best      297
Facing those scary "what-ifs?"     298
Taking charge of your future     298
Navigating the Planning Process: It's as Easy as One, Two, Three     300
Where are you now?     300
What might the future bring?     303
What can you do now to be ready?     306
The Part of Tens     309
Ten Must-Do's for Living with MS     311
Educate Yourself about MS     311
Work with Your Neurologist     312
Start Treatment Early     312
Make MS a Part of the Family     312
Develop Your Support Network     313
Plan for the Future     313
Feel Healthy and Well     313
Create Your Tool Chest     314
Monitor Your Mood     314
Keep Your Sense of Humor Well-Oiled     314
Ten MS Myths Debunked     315
MS is Fatal     315
Everyone Eventually Needs a Wheelchair     315
Because There's No Cure, There's Nothing You Can Do about Your MS     316
People with MS Can't Handle Stress     316
People with MS Shouldn't Have Children     317
"Natural" Treatments Are Safer     317
No One Can Understand How You Feel      317
Having a Relapse Means Your Medication Isn't Working     318
Scientists Aren't Making Any Progress     318
If You Can't Walk, Your Life Is Over     318
Ten Tips for Trouble-Free Travel     319
Tap the Right Resources     319
Calm Your Medical Concerns     320
Save Energy for the Fun Stuff     320
Check Ahead for Accessibility     320
Rent Accessible Vehicles     321
Keep Your Cool     321
Navigate Air Travel with Confidence     321
Safely Pack Your Prescriptions     322
Get Vaccinated     322
Look for Adventure     322
Appendixes     323
Glossary     325
Additional Resources     339
Reading Other Books about MS     339
Finding Helpful Information Online     341
General information sites     342
Assistive technology sites     342
Government sites     343
Organizations and services     343
Chat rooms and bulletin boards     344
Medications Commonly Used in MS     345
Index     349

Interviews

Cheat Sheet for Multiple Sclerosis For Dummies

From Multiple Sclerosis For Dummies, 2nd Edition by Rosalind Kalb, Ph.D., Barbara Giesser, MD, Kathleen Costello, MS, ANP-BC, MSCN, MSCS

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 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.

Ways to Feel Your Best When You Have Multiple Sclerosis

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.

Hints to Managing Your Energy Bank with MS
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).

A Snapshot of Your Healthcare Team When You Have MS
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.

Partner with Your Neurologist to Battle Multiple Sclerosis
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.