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A New Look At a Well-Worn Road It seems like the worst has happened. The symptoms you have been having—the tingling in your hands, the numbness on your left side, the vision problems—they aren’t just in your head. They are real. They are there. They haven’t just gone away, never to return. They’ve come back . . . again. And they are much more serious than you thought. Your doctor referred you to a neurologist who examined you and had an MRI scan done to see what was going on in your brain. It was what he expected, but what he wished wasn’t so. . . . You have MS. Multiple sclerosis. That disease that Martin Sheen’s presidential character has on The West Wing. That condition you’ve heard about, the one that your aunt, or your distant cousin, or a friend of a friend lives with. The disease without a cure. The disease that will not go away. Never. Only get worse . . . and worse. Stop! Developing multiple sclerosis in today’s world does not have to be a bleak, grim journey. It does not have to be the start of a road that only spirals down. It does not have to be a mystery that can’t be solved. Today multiple sclerosis can be treated and stabilized, its course altered.
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MS: MORE COMMON THAN YOU THINK When someone has a severe brain or spinal cord injury, it is catastrophic. The world stops for the survivor, the family, and loved ones near and far. Because these are such dramatic events, they get a great deal of attention—from physicians, hospitals, research facilities, and the press. Multiple sclerosis is different. Its symptoms are subtle; sometimes people aren’t even aware of anything more than a slight discomfort or tingling sensation. It is an unpredictable disease, often receding without any residual symptoms—and sometimes not coming back for years. Other times, MS recedes and reoccurs with great frequency. Because of the subtle mysteries that cloak MS, it does not get the same attention as a catastrophic accident or disease. This might give people the sense that it is a rare condition— and when you do get it, you might feel even more alone or “picked on” than you would with a different disease. Nothing could be further from the truth. Multiple sclerosis is a fairly common condition, with approximately 350,000 people who have it living in the United States. Some other truths—and other “multiple” myths exposed: Multiple Myth #1: Multiple sclerosis is a fatal disease. Once diagnosed, your fate is sealed. Not true! Most of those 350,000 people who are diagnosed with MS go on to live as long as anybody else and have a nearly normal life span.
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Multiple Myth #2: If you’ve been diagnosed with MS, you will eventually be paralyzed and in a wheelchair. That’s a guarantee. Yes, it is true that half the people who have multiple sclerosis will eventually have trouble walking. But that fate is not etched in stone. Early detection and early treatment can help improve the odds that you will either delay that time or be the other half that walks independently. Multiple Myth #3: With MS, it’s diagnose—and adios. There’s nothing anyone—including your doctor—can do to help. Wrong again. It’s true that in the past doctors were at a standstill when it came to multiple sclerosis. By the time they were able to diagnose it, the disease was in place. There was nothing anyone could do but hope it didn’t progress too quickly. That’s not true today. The new ABC + R drugs (Avonex®, Betaseron®, Copaxone®, and Rebif®) aggressively treat MS nerve inflammation and help prevent the disease from getting worse. And better diagnostic tools, including today’s MRI (magnetic resonance imaging) scan of the brain, mean that MS can be detected very early on. Together, they are a formidable enemy that can keep MS at bay! Add a healthy diet and regular exercise and there’s no reason why a person with multiple sclerosis can’t have a good quality of life.
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Multiple Myth #4: MS is contagious. No way! There is absolutely no evidence that MS can be passed on from person to person, either through sexual or casual contact. It is not an infectious disease. Multiple Myth #5: Once a woman is diagnosed with MS, she can forget about getting pregnant and having children. Wrong again. Not only can a woman with MS get pregnant and give birth, she can even enjoy sex! A severe disability may make pregnancy more difficult, but not impossible. Although relapses are more common in the first few months after delivery, most women will not have a relapse during the pregnancy itself. In fact, most people with multiple sclerosis can have a fulfilling sex life—despite a disability. (We’ll be going over sexuality and multiple sclerosis later in this book.) These are only a few of the “multiple” myths around. There are as many myths about multiple sclerosis as there are for other diseases and conditions. As we all know, fear, especially of the unknown, breeds false theories, and a victim mentality. Multiple Sclerosis: A New Journey was written to help dissolve that fear with knowledge and education. It explains what MS is and why it creates its sometimes unpredictable symptoms. This book is your guide to these different symptoms—and the problems you might encounter. You’ll learn how to cope with MS and: • Sexuality • Your daily life and work routines • Bladder and bowel function • Mobility
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• Fatigue • Depression • Problems with memory and other cognitive functions • Visual problems • Spasticity • Pain
A NEW HOPE, A NEW JOURNEY Consider Multiple Sclerosis: A New Journey your guide to a new landscape, one that tells it “like it is”—while, at the same time, providing real hope, real promise, and real treatment plans. You’ll learn all about the new, effective ways to diagnose multiple sclerosis, biomedical advancements that enable neurologists to better determine right from the start whether or not you have MS. It also details everything you need to know about the new, exciting treatments for multiple sclerosis. You’ll discover the facts about the disease-modifying drugs (called ABC + R), the medicines that make it possi ble to fight back aggressively. Between the new diagnostic advances and the ABC + R drugs, your condition can be caught early—and aggressively treated. You’ll also find important information about rehabilitation—and why it is important in promoting a good quality of life. You’ll learn what makes a good MS rehabilitation center, the “A-team” health care professionals that work best, even about new alternative therapies that people have tried. You’ll also hear true-life stories of people who have MS— and how they have handled the progression of their disease. You’ll find people who have had only two episodes; others
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who have gotten progressively worse; still others who were never bothered by MS again. You’ll feel their hope, their strength, and find real solutions to the real problems that you may have. Finally, the unique Multiple Sclerosis: A New Journey wants you to have the most up-to-the-minute information about MS diagnosis, treatment, research, and symptom management. With that in mind, this book will be updated and revised periodically so that the newest facts and figures will never be more than a page away.
A NEW LOOK AT MULTIPLE SCLEROSIS FOR PATIENTS AND THEIR LOVED ONES Statistics show that MS is the leading disease-causing dis ability in young people. They also show that within 15 years, half the people with MS will not be able to walk without an assistive device. Change these numbers. Learn everything you can. And, if you have symptoms of MS, don’t let them rule you. This book shows you how to become master of your own disease, your own guide on a journey of hope. Don’t be afraid: be armed. Let’s begin. . . .