Living Well with MS is a necessary companion for coping with this treacherous and insidious disease. It fills a strong need for a comprehensive book that will both comfort and inform the patient, family, and caregiver.
• What is MS?• But Is It Really Ms?• At the Doctor's Office: Diagnosis and Prognosis• Treatments for MS• Exercises• Diet• Sexual Dysfunction• Tricks for Dealing with Specific Problems• Emotional Coping• Especially for the Caregiver and the Family• Hope for a Cure
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Read an Excerpt
Between a quarter-and a half-million persons in the United States today have multiple sclerosis. The first question that is asked by a majority of them when newly diagnosed by a physician is: "Will I die from this disease? Is it fatal?"
The answer is a definite no.
Multiple sclerosis, or MS as it is more commonly called, is not classified as a fatal ailment. Most patients live out the normal course of their lives, and the life-expectancy rate of an MS person is only slightly less than that of the national average. In the most severe cases it is possible that complications caused by symptoms can eventually lead to death; but, generally speaking, this is rare. MS is a disease that you can live with.
The second most common question that doctors hear immediately after a diagnosis is: "Is there a cure?"
Chemical medications do exist which will keep the disease under control in many instances, and which will palliate its symptoms. As yet, however and though there are literally hundreds of claims, some within the margins of orthodoxy, some not no one has yet produced accepted medical evidence that any form of chemotherapy, arsenic treatments, surgery, vaccine, diet, enzymes, ultrasound, chelation, dental therapy, megavitamin regimes, snake venom, sitz baths, or any others on the long list of candidates in any way cures this disorder.
The third thing patients want to know most commonly, is: "Howmuch will this disease affect my day-to-day functioning?"
Here the answer is less cut-and-dried, for at the very heart of this strange disorder is a profound unpredictability. Some people, for example, have MS all their lives and are rarely bothered by it. Others develop extremely serious symptoms and are wheelchair or bedbound within a year after the onset. A few never even know they have it.
A majority of patients, however, experience either a relapsing-remitting" or a "relapsing-progressive" form of the disease, in which symptoms tend to come and go, leaving patients with stretches of time in which they suffer some discomforts but are able to live relatively normal lives.
One study shows, for example, that after twenty-five years, 65percent of MS sufferers are still able to walk, talk, and manage theaffairs of their daily lives in an efficient way. Such persons takeprecautions, of course, many of which we will discuss in this book.They tire easily. They may use canes when they walk to the cornerstore, or wear braces on their legs when they go out. They maynot be able to ski or bungee jump, or do certain of the things thatthey did before they became sick. But they manage. MS in mostcases is a manageable disease. A quote from the National MultipleSclerosis Society's pamphlet Living with MS is apropos in thisregard:
The public image of MS is overly negative. MS is commonly associatedwith people in wheelchairs since those are the easily recognizable cases.The facts, however, reveal that most MS patients do not require wheelchairs. Many are only mildly incapacitated, and there are others whohave no physically disabling symptoms at all. These people are often lostto medical follow-up, and their mild cases are not reflected adequately by statistics. You will no doubt hear stories of people suffering the most severe cases of MS. Try to avoid making comparisons between yourselfand other MS patients; every case is unique and unpredictable.*
A fourth question often comes up: "Is the disease contagious? Are other members of my family at risk?"
Here a flat no. There is no demonstrable evidence to show that multiple sclerosis can be passed on from one human being to another. Studies of married couples of whom one spouse has MS, for example, show conclusively that there is no increase in risk for the healthy partner. Within families in which one child has the disease there is a slight increase in incidence for siblings, but all available evidence indicates that this is due to genetics rather than contagion.
The last question frequently asked in the examining room is: "Will I experience much pain?"
Here again there are no sure answers, though the odds are heavily on a patient's side. Most persons with MS suffer various degrees of discomfort, but only a few complain of severe pain. In many cases, this pain can be relieved by medications. In some cases it can be fully eradicated.
One final fact to note about MS before we move on is that it is an entirely modern disease. At the end of the eighteenth century it was apparently unknown among the general population, and cases did not begin to appear on a regular basis until the middle of the 1800s.
While some researchers claim that the disease did, in fact, exist in earlier times but went undiagnosed, early medical reports do not back up this theory, and there is a conspicuous lack of historical symptom descriptions that in any way resemble those of MS.
Why this is so is difficult to say. It would seem at first that the answer is obvious: some by-product of the modern, industrial world attacks the nervous system and causes the disease. Sounds plausible. As yet, however, there is little evidence to demonstrate a traceable relationship between MS and chemical or industrial wastes. Many studies have been made through the years focusing on the possible role of practically every type of toxin and pollutant: toxins in the water, in the air, in the soil, in food. None have shown any correlation with the development of MS.
For the time being, therefore, we must satisfy ourselves with the disconcerting reality that MS is an unpredictable and elusive ailment that comes and goes, and that so far defies all attempts at fully understanding its cause.
* Lynn Wasserman, Living with MS: A Practical Guide, National Multiple Sclerosis Society, 1978.