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MS and Your Feelings HANDLING THE UPS AND DOWNS OF MULTIPLE SCLEROSIS
By Allison Shadday
Hunter House Inc., Publishers Copyright © 2007 Allison Shadday
All right reserved.
Chapter One Knowledge Is Power: Getting an Accurate Diagnosis
The most effective way to ensure the value of the future is to confront the present courageously and constructively. For the future is born out of and made by the present. - Rollo May, Man's Search for Himself
By choosing to read this book, you've accepted the challenge of confronting the present and you're taking an active role in constructively shaping your future. If you're currently living with MS, you've experienced firsthand how terrifying it can be to hear the words, "You have multiple sclerosis." An MS diagnosis can strike panic in the bravest of souls. It changes your life forever.
As someone who lives with the disease, I understand how the news can turn your world upside down. All your previous assumptions and expectations are replaced with uncertainty. It can literally feel like the beginning of the end. But it is possible to move beyond the initial reaction of fear and panic and eventually to integrate the illness into your life. Over theyears, I've watched with amazement and admiration, as hundreds of my clients have made peace with the disease in their own unique ways. Listening with an open heart and a curious mind, I've seen patients resolve their emotional conflicts with grace, dignity, and determination. Their courage has inspired me to write this book. Although identifying details have been changed to protect their privacy, many of these clients' stories are shared throughout the chapters.
Each person navigates the course of their disease differently; yet, the first step for all of us is to get an accurate diagnosis. For a number of reasons this can often be an extremely difficult undertaking. Some of you may be in the process of getting diagnosed-others may have been given a nondefinitive diagnosis. I encourage you to read on and get the facts, in order to proactively take part in the diagnostic process. Otherwise, you may be discounted or left lost in limbo with a misdiagnosis.
THE MYSTERY ILLNESS
In order to fully participate in the diagnostic process, it helps to know some of the basics about the physical aspects of MS. In many regards, MS is still a mystery. We do not yet know what causes it or why it affects some people and not others. And, although we now have drugs that can help treat MS, we still don't know how to cure it. That said, we have learned a great deal about the disease since it was first described by the French neurologist Jean Charcot in 1868.
Put simply, MS is a disease of the central nervous system that involves the brain and spinal cord. The central nervous system controls all our bodily functions and movements. Needless to say, the healthy functioning of this system is critical to our ability to think, feel, and move.
The brain sends and receives signals and the spinal cord uses a network of nerves to transmit those signals to different parts of the body. Our nerves are coated by a type of insulation called myelin. Problems occur when disease activity triggered by MS causes the protective myelin to break down and replaces it with scar tissue.
This process is called demyelination, which impedes the flow of signals from the central nervous system to the body. For example, while your brain may be trying to tell your legs to move, they may not be getting the message. So, damage to the nervous system can result in difficulty with day-to-day functioning. We will talk more about the specific symptoms associated with MS later in this chapter.
The nervous system can be compared to the electrical system that powers your home. Nerves are somewhat like electrical wires and the myelin sheath is like the protective plastic coating on an electrical wire. The process of demyelination is often compared to stripping away the plastic coating on an electrical wire, compromising the wire. The myelin sheath, which protects and insulates the nerves, is gradually destroyed by the disease process of MS.
When this occurs, the nerves (axons) are no longer able to effectively do their job-which is to quickly communicate and send messages easily from brain to body. This means that once the damage has occurred, the information must travel in a less efficient route and push through less direct channels. Depending on the location and number of lesions, the brain's ability to communicate can be greatly disrupted.
Imagine driving into the mountains, only to be sent on a detour because a mountain pass is closed. It takes you hours longer, driving through snow and darkness, to get to your destination, and you're exhausted at the end of the trip. This is the effect that demyelination can have on your ability to function and on your energy level. In MS, this decrease in the brain's ability to process information is a primary cause of profound physical and mental fatigue. Your brain has to work much harder to get its messages across. Hence, you can become tired just from thinking.
MS is considered an autoimmune disease of the nervous system. The word "multiple," in multiple sclerosis, indicates the many areas of demyelination from repeated attacks that occur over time. The word "sclerosis" refers to the scarring that appears on the brain and spinal cord. We don't know why, but this process of demyelination differs vastly from patient to patient, and, hence, the course of the disease also varies widely. You simply can't predict how the disease will affect you. Often symptoms will resolve and patients will regain function after an attack, or some residual damage may remain, but they experience a partial recovery.
by Dr. Stanley Cohan
There is also some evidence to suggest that viral infection may be the initiating step in most, if not all, cases of MS. There is a critical need to prove, or disprove, the pivotal role of viral infection in causing MS. If viral infection is the initiating event, treatment with antiviral medications could prevent onset, or rapidly terminate the disease process in its earliest stages, before significant damage to the nervous system could occur. Environmental factors, including air, water, and food-borne toxins, temperature, sunlight exposure, and nutritional deficiencies, as causes or contributors to the risk of acquiring MS, all have their adherents. Some of these proposed environmental contributors to MS risk are potentially significant, yet little or no valid scientific evidence exists to support these possible causes. Rather than dismiss these theories as invalid for lack of corroborating scientific evidence, well-designed scientific studies should be performed on the more biologically plausible of these theories, in order to establish or eliminate them as important possible contributors to MS. Although MS is not a hereditary disease in the traditional sense (you don't inherit MS), genes may play an important role in determining why one person exposed to a virus, which could cause MS, contracts the disease, while another person, exposed to the same virus does not develop MS. Although some candidate genes have been identified, the picture is currently incomplete. With proper identification of MS-risk genes, it may be possible to develop medications that turn off these genes, or block the biological effects of proteins produced by these genes, thus turning off the disease process once it has started, or preventing the disease from ever starting in a genetically susceptible individual.
TYPES OF MS
The medical community has attempted to categorize the different types of MS and the following are the currently accepted categories:
* Relapsing remitting MS is a condition developed by about 20-30 percent of patients and is characterized by periods of relapse, followed by periods of full or partial recovery and remission.
* Secondary-progressive MS is developed by about 50 percent of patients with Relapsing Remitting MS-typically 10 to 20 years after their initial diagnosis. This type of MS is characterized by a slow increase in disability without remission. * Primary-progressive MS is developed by only about 12 percent of patients. This condition causes a slow, but steady, increase in disability from the onset of diagnosis. * Chronic-progressive MS occurs in another 10-20 percent of patients. This condition involves a slow worsening of symptoms, without periods of remission, but the onset is much slower than that of Primary-Progressive MS.
As Dr. Cohan mentioned in his Foreword, most MS specialists feel hopeful that as more patients benefit from the new disease modifying treatments now available, we will see less disability and a reduction in the number of cases that become Secondary-Progressive. We will talk more about how these treatments, and other medications, can benefit you throughout the book.
Unfortunately, MS often strikes people between the ages of 20-40. It affects twice as many women as men. Many speculate that the actual number of people with the disease is much higher than the estimated 400,000, because the disease often goes undiagnosed. One reason for this is denial.
Accepting the Unacceptable
Often people intuitively know when something is seriously wrong with them, but they deny their symptoms and hope and pray that they'll go away. I know I did.
Admitting that you're having unusual symptoms and telling your doctor about your situation is in itself a gutsy step. Seeking a diagnosis requires overcoming fear and facing reality-two intimidating tasks. This was certainly the case for Sara, a woman in her early thirties who spent 12 years fearing that she might have MS. She recalls:
My college roommate was a nursing student. When I told her about my weird symptoms she said it sounded like MS. We both studied the disease and what I read scared me. Once we suspected MS, fear festered inside me like a wound. For years, when strange symptoms mysteriously appeared, panic would sear through me. Anxiety kept me from going to the doctor. After I was married, my husband finally insisted that I find out why I was so tired and forgetful, and why I sometimes felt numb. It was what I had feared all along-MS.
Sara's story is not unusual. Anxiety makes it tempting to ignore the dizziness, numbness, and other less obvious symptoms of MS. Since many early symptoms are vague and transient, it is easy to be seduced into rationalizing their existence. Marsha, an MS patient in her twenties, explains, "As long as I didn't have a diagnosis, I could pretend I didn't have a problem. It was safer to think it was all in my head, than to face it straight on."
It's not uncommon for us to ignore our instincts and deny that something is wrong with our bodies. However, facing reality is necessary in order to start managing our health. In Kitchen Table Wisdom, Dr. Rachel Naomi Remen writes, "In denying our own suffering, we may never know our strength or our greatness." We must listen to what our bodies are telling us if we're to take care of ourselves. Ultimately, the genesis of our strength and greatness comes through this knowledge.
As scary as it may be to confirm the diagnosis of MS, many feel a deep sense of relief when they finally discover the cause of their mysterious symptoms. Emma, a 38-year-old MS patient, says, "I knew something was wrong. This may sound strange, but getting the diagnosis gave me solace. MS put a name to what I was experiencing and it helped me take a course of action." Clients often instinctively know that they're ill and once someone else verifies it, the flood gates of worry are released and reason can finally take over.
This feeling of relief isn't surprising since living with ambiguity generally causes greater stress than dealing with the facts. An official diagnosis allows people to shift their focus from anxiety and fear toward a proactive treatment plan.
Getting a Diagnosis
As many of you know, even after you've made the decision to explore the cause of your symptoms, it can still be a battle to obtain an accurate diagnosis. Almost every MS patient experiences obstacles while going through the diagnostic process.
In part, this is because most general practitioners find the indicators of MS to be confusing or misleading. Since MS patients report a wide range of symptoms, including memory loss, strange pains, ringing in the ears, difficulty swallowing, clumsiness, confusion, depression, numbness, dizziness, bowel and bladder issues, and vision and balance disturbances, it is easy to understand that these problems can be attributed to many different causes. These ambiguous symptoms often lead to a series of time-consuming tests and inaccurate diagnostic conclusions. As a result, patients frequently leave their doctor's office with more questions than answers, once they have begun their quest to determine the source of their symptoms.
Trust Your Intuition
Shockingly, many of my clients have been told that their problems are psychological rather than physical in nature. In fact, not long ago, many MS patients were actually misdiagnosed as having hysteria. This can be a humiliating and discouraging experience, but you must stay the course and pursue the truth. One determined patient, Nancy, who has lived with MS for five years, describes her ordeal:
When I first went to my general practitioner to tell him about the numbness in my face, he suggested it was a reaction to stress in my new job. The same doctor told me that the numbness in my legs was caused by wearing ski boots and my dizziness stemmed from an inner-ear infection. He basically implied that it was all in my head. Finally, I went to a neurologist, who immediately suspected MS. After further testing, he confirmed the diagnosis. The worst part of the whole ordeal was that I was beginning to think I was going crazy.
By following her own intuition, Nancy found the truth she was seeking. Even today, some doctors are still hesitant to give the diagnosis of MS. One physician I spoke with was direct and honest about his dread of telling patients they had the disease: "It is difficult to tell someone in the prime of their life that they have a chronic and progressive neurological condition. I tend to take the 'wait and see' approach before sending them on to a specialist." To be fair, until recently it was difficult to definitively determine a diagnosis of MS and there were no viable treatment options available. This may have led physicians, as well as patients, to be less vigilant about exploring the possibility that MS could be lurking. Dr. Louis Rosner, author of Multiple Sclerosis, writes, "Even when MS has been strongly suspected, many doctors are reluctant to inform the patient of an unconfirmed hunch. Instead, they have been more likely to wait for more signs and symptoms to appear, a process often taking many years."
Fortunately, significant breakthroughs in MS medical research are changing the diagnostic process for the better. Great strides have been made in the last 10 years. Sophisticated magnetic resonance imaging (MRI) techniques are now used in conjunction with spinal taps, clinical histories, and physical exams to more accurately diagnose MS.
Find the Right Doctor
Whether you know you have MS (or you suspect you have the disease and are in the process of seeking a diagnosis), it is critical to find a neurologist who has experience treating MS. Because this is such an unusual disease, it requires specialized training to treat it properly. You should be able to turn to your physician for information, guidance in treatment options, direction in symptom management, and decisions about hospitalization. In addition, your doctor should be able to refer you to other specialists, such as physical therapists, counselors, occupational therapists, and home-health service workers. We will discuss the benefits of many of these services in later chapters.
Excerpted from MS and Your Feelings by Allison Shadday Copyright © 2007 by Allison Shadday. Excerpted by permission.
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