Multiple Sclerosis For Dummies

by Rosalind Kalb, Barbara Giesser, Kathleen Costello

Overview

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.

Product Details

ISBN-13:	9781394300921
Publisher:	Wiley
Publication date:	02/11/2025
Edition description:	3rd ed.
Pages:	400
Product dimensions:	7.40(w) x 9.10(h) x 1.00(d)

About the Author

Rosalind Kalb, PhD, CHC, is a clinical psychologist and lead ­senior programs consultant at Can Do MS, a health and wellness ­organization for those affected by MS.

Barbara Giesser, MD, is a neurologist and director of the MS Comprehensive Care Clinic at the Pacific Neuroscience Institute.

Kathleen Costello, ANP-BC, MSCN, is chief operating officer at Can Do MS.

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Table of Contents

Foreword xv

Introduction 1

Part 1: When MS Becomes Part of Your Life 5

Chapter 1: Meeting MS Face to Face 7

Chapter 2: So, What Do I Have? Getting a Diagnosis 25

Chapter 3: You Have MS — So Now What? 39

Chapter 4: Getting the Right Players on Your Healthcare Team 57

Part 2: Taking Charge of Your MS 73

Chapter 5: Developing a Plan to Take Charge of Your MS 75

Chapter 6: Managing the Disease Course and Treating Relapses 83

Chapter 7: Managing Symptoms That Impact Sensation 101

Chapter 8: Managing Symptoms That Impact Motor Function 111

Chapter 9: Managing Invisible Symptoms 125

Part 3: Staying Healthy and Feeling Well 165

Chapter 10: Paying Attention to Your Health — It’s Not All about MS 167

Chapter 11: Making Healthy Lifestyle Choices 177

Chapter 12: Handling Stress without Giving Up Your Life 189

Part 4: Managing Lifestyle Issues 203

Chapter 13: Presenting Your MS Face to the World 205

Chapter 14: Making MS a Part of the Family 219

Chapter 15: And Baby Makes Three, Four, or More: Planning a Family around Your MS 241

Chapter 16: Parenting: It Wasn’t Easy Before You Had MS! 251

Chapter 17: Coping with Progressive Forms of MS 269

Part 5: Creating Your Safety Nets 287

Chapter 18: Keeping Your Place in the Workforce 289

Chapter 19: Getting a Grip on Insurance 305

Chapter 20: Planning for a Future with MS 319

Part 6: The Part of Tens 333

Chapter 21: Ten MS Myths Debunked 335

Chapter 22: Ten Tips for Care Partners 341

Chapter 23: Ten Tips for Trouble-Free Travel 347

Glossary 353

Index 365

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.