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To understand the intensity and the diversity of the struggles that people with MS encounter every day, it's useful to first look at some medical facts, beginning with a description of multiple sclerosis from a clinical perspective.
MS is a disease of the central nervous system, including the brain and spinal cord. The brain is supposed to send signals, via the spinal cord and an intricate system of nerves, to all parts of the body. The signals let the body parts know what they're supposed to do at any particular time (move, relax, react to outside stimuli such as pain or heat, etc.). This whole system is protected by a fatty covering called the myelin sheath. When multiple sclerosis comes along, it tricks the body's immune system into attacking the myelin covering, breaking it down in patchy areas throughout the system. This causes the formation of sclerotic (hardened) spots, which get in the way of the brain's messages, distorting them or blocking them entirely. As a result, the feet can't walk, the hands can't touch, the eyes can't see. Malfunctions can occur in just about any part of the anatomy, depending on what area of the nervous system is currently affected.
MS carries with it a mixed bag of tricks, which it distributes to its captives at random in the form of varied symptoms. These can include numbness, tingling, and other strange sensory perceptions, such as buzzing or crawling or burning sensations on the skin, for which there's no apparent reason. There might be motor problems, such as the inability to walk, raise an arm, grasp, or hold onto something; these can eventually progress to paralysis. There can be a general experience of "klutziness," imbalance or uncoordination. Vision or hearing may be impaired, suddenly or gradually. There may be difficulty in controlling the eye muscles, so focus is off or vision is double or "jumpy." There can be muscle spasms anywhere in the body, difficulty speaking, difficulty swallowing. Problems with bladder control are common, with episodes of retention or incontinence. The same is true of bowel control. There might be emotional upsets, pain, overwhelming fatigue.
Most MSers never have all these symptoms at once, or even at different times. Some go through a whole lifetime with nothing more than a couple of mild episodes that cause problems only in very limited areas.
It's impossible to predict the course of the disease in any individual. The MonSter likes to make its first appearance when its victim is between the ages of twenty and forty, although some cases have been diagnosed before age ten or after age fifty. At first, the condition generally involves attacks, or exacerbations, in which symptoms last from a few hours to several months. Then a period of remission occurs, during which the patient seems to recover, sometimes with no obvious residual effects. Experts say this occurs because the myelin is capable of repairing itself, at least for a while. The hiatus may last months, even years, before a new attack sets in. Sometimes this pattern of relapse and recovery continues indefinitely (this kind of MS is known as the relapsing/remitting type). In many people, the remissions eventually become less frequent and are less complete; attacks are less defined, and steadily increasing disability ensues (this is known as the secondary progressive type). In other cases, there aren't any real remissions; the disease progresses steadily from the onset, with perhaps an occasional "plateau" time when everything seems to remain stable for a while (primary progressive type). For some, finally, the MS progresses consistently, with no remissions or plateaus, but with occasional times of dramatic attacks or worsening symptoms (progressive relapsing type).
Fortunately, those who go steadily downhill are in the minority. It should be remembered, too, that when it comes to MS, very few firm pronouncements are allowed. There can occasionally be crossovers between two or more types, so that a patient may start out in one classification, switch to another, and then move to another or back to the original.
People with MS usually don't die from it. In the most severe cases, which make up only a very small percentage of the overall MS population, there might be complications such as pneumonia, severe urinary tract infections, and skin breakdown that are potentially fatal, but MS itself rarely causes death. The life expectancy for MSers is close to that for people without MS. More than a third of a million people in the United States have been diagnosed with multiple sclerosis; many more cases may remain undiagnosed because MS's symptoms sometimes mimic those of other conditions. Multiple sclerosis isn't contagious, and it isn't inherited, although familial susceptibility to the condition is sometimes apparent.
At the present time, there's no known cure for MS. So there's nothing to be done about it, at least as far as stopping it completely is concerned. There are, however, several very effective treatments now available that may lessen the frequency and severity of attacks, reduce the risk of permanent damage, and minimize existing symptoms. And it seems that there's always word of still another new drug or treatment being tested against MS.
Probably the most common treatment is intravenous steroid infusions, administered over a period of several days. This is usually done at the beginning of an exacerbation as a means of reducing inflammation and preventing permanent trauma to the nervous system. The bad news about such treatment is that it usually involves a number of side effects. These can include water retention, weight gain, increased susceptibility to infection, loss of bone mass, insomnia, and mental changes. Side effects seem most obvious just after the patient finishes the course of treatment. Until the medication leaves the system completely, he or she is usually plagued by the above effects, accompanied by a period of hyperactivity that isn't relieved by sleeping pills or other sedative measures. The ladies in our group usually refer to this time as "doing the steroid shuffle."
The good news is that this same period is frequently marked by a most welcome mental change, a feeling of well-being that can extend to pure euphoria. Sometimes, too, the hyperactivity results in clean houses, caught-up paperwork, completion of all the tasks that usually have to compete for attention with MS's gift of chronic fatigue. The best news is that these treatments can effect a dramatic improvement in the patient's condition, at least temporarily.
For the past few years, many people with MS have been able to slow the progress of the disease by using one of the interferons or copolymers. There can be side effects with these, too, usually flulike symptoms that subside after the body adjusts to the presence of the medication. I used an interferon for more than a year. I gave myself an injection every other day; the thought of doing it was scary at first, but it soon became as routine as taking a pill. And it did slow the progress of my symptoms for that year. I'd probably still be on it, but eventually I developed a hypersensitivity to the drug, which caused me to break out in hives.
I'm now taking an immunosuppressant in an effort to keep the immune system from attacking itself. This is considered a rather radical treatment; I don't personally know another MSer on the same medication. My neurologist warned me at the beginning that this drug would lower my resistance to infection to a possibly dangerous level. He also advised that eventually the drug could cause cancer of the lymphatic system. He suggested that I ask the hematologist/oncologist I was seeing at the time for his opinion. This doctor said, "Your neurological condition is deteriorating every day. Look at it this way: Use the medication and you might have five more years of a full, productive life. Don't use it, and you might live for ten more years, but you'll have continually increasing disability, to the point where you really won't be living at all." It didn't take much more than that to convince me to start the treatment.
So far, I've been happy with the results. For almost a full year, my symptoms remained stable. It's only recently that there has been further progression. My blood is checked at least once a month to keep track of any changes. Nothing alarming has shown up during this time.
Aside from these few systemic remedies, multiple sclerosis is usually treated symptomatically. Each of the ladies in our group takes an assortment of muscle relaxers, painkillers, antidepressants, and, frequently, nutritional supplements. Sharon, for example, tells us that she couldn't get along without her "megadoses" of vitamins and supplements. (Sharon has done extensive research into this treatment, has had professional assessment of her needs based on many factors in addition to her MS, and takes the vitamins and supplements under professional guidance. She recommends that anyone considering such therapy do the same.) Some of us manage or minimize symptoms through exercise programs, physical or occupational therapy, meditation, and relaxation techniques.
We understand that further advancements in finding treatments and a cure for MS will be expedited by determining what cave this MonSter crawled out of. Ongoing research is trying to find out how it came into being, and how it got from there and then to here and now. Much of the research shows that there is a virus involved somewhere, but nobody knows exactly which virus or what role it plays. One theory suggests that one or more viruses, introduced into a person's system during childhood, remain dormant for years until some other factor (genetic? environmental?) triggers them to become active again. Then, experts say, some kind of mix-up in the immune system causes it to confuse the virus with myelin and to begin to destroy the myelin.
There have been any number of theories as to what triggers this mix-up. Investigation has been done into trauma, hormone imbalance, exposure to some toxin or another, suppression of sweat, and poor blood circulation, to name just a few. So far, there is no proof that any of these factors has a direct relation to MS. The research continues, but for now the answer to "What causes MS?" is still a big "Who knows?"
Have you noticed that almost every statement about multiple sclerosis is preceded by an indefinite term such as usually, almost always, sometimes, may, can, might? That's because the only thing that's consistent about MS is its inconsistency from one individual to another, and also within each individual. Symptoms and progression vary from person to person, and it's difficult to predict the disease's path in any patient with any accuracy. With multiple sclerosis, the only thing we can count on is that we can't count on anything. That's not all bad. It means that for people with MS, forever doesn't always mean always. There have been patients whose severely disabling MS somehow "burned out," leaving no long-term effects. There's always the chance that this will happen for each and every one of us. Meanwhile, we just go on living with the MonSter. That's what all the conversations in this book are about.
Meet the Flutterbuds, the "characters" who so generously and honestly shared with me their stories about life with multiple sclerosis, and then agreed that we could share their stories with everybody who reads this book.
* * *
RENEE is forty-five. She and her husband, Burt, have six children/stepchildren and are raising their grandson Dominic, who is ten. Officially diagnosed in 1986, she uses a cane for balance and support. She has frequent problems with vision, cognitive function, and sensory perception in her extremities.
We call Renee "Cybermom" because, besides being the chief founding member of our Froup, she has assumed a kind of maternal responsibility for each of our members. She's also "Queen of Purple Gak." Any time a member of our group encounters a major life change, whether good or bad, Renee throws a handful of a sticky, slimy substance known as Gak at a designated space on one of the walls in her home (reserved just for this purpose). "Gakking" a person is the symbolic equivalent of a prayer, a blessing, a celebration, or a sympathetic gesture, as fits the occasion.
* * *
JANE, forty-eight, was diagnosed with multiple sclerosis as a twenty-four-year-old newlywed, when she lost the vision in one eye (the vision returned several weeks later after treatment with adrenocorticotrophic hormone, or ACTH). "It's only during the past six months that I've had four more episodes of temporary blindness-a pretty good record for twenty-four years of living with MS!"
Married and the mother of three almost-adult children, Jane leads a weekly online worship service for people with multiple sclerosis and is involved in four weekly online support groups.
There are seldom two days in a row when I don't see that God has led me to someone or someone to me. It is awesome to see him so active in cyberspace, which, of course, he is, in a big way!
Jane uses "Tingles" as her online signature.
* * *
LORI, twenty-eight, is married to Steve and has a young daughter, Amanda. She began having symptoms of multiple sclerosis when she was seventeen or eighteen years old. She didn't start to actively search for a diagnosis until the past year. She has official diagnoses of fibromyalgia, intention tremor, and neurogenic bladder (see the glossary). Her doctors believe that her symptoms and abnormal neurological exams make it "highly probable" that she has MS; they have not given her a firm diagnosis so far.
She is currently ambulatory and uses a cane for balance. Her most troublesome symptoms are fatigue, cognitive issues, pain, tremors, and migraines ("which may or may not be related to the multiple sclerosis").
Lori worked as an executive secretary for the president/CEO of a large development firm until December of 1996. At that time, stress-induced fatigue and many other symptoms played a large role in her decision to adopt a more sedate lifestyle.
Before all of this started to affect me physically, I was very active. I used to love to rappel and mountain climb and was active in the MP unit of the Army National Guard. I am having a hard time getting to the point where I am thankful for actually getting to do some of the things I used to do, instead of being resentful that I am no longer able to do all of them. I get a little bit farther every day, though.
The baby of the Froup, Lori is nicknamed "Whippersnapper."
* * *
JANIS, forty-two, is married, with two young children. She is still in the remitting/relapsing stage of multiple sclerosis, and she seems to do a lot of both. We call her "Rainbow" because she looks for one in every dark situation.
I am a fighter, and I will not let this disease get the best of me, no matter what it throws at me.
* * *
CHRIS, forty-five, is married, and has a twenty-year-old son. She was diagnosed in 1995, and her current condition involves "lots of cognitive problems, which sometimes make life a real challenge!!!"
She recently began to use a cane for walking, which she considers another challenge. Other symptoms include fatigue, vision problems, "and the list goes on and on!!!"
Chris is nicknamed "MS Excited," because of her liberal use of exclamation marks when she "talks" online.
* * *
BREN is thirty-four years old. She lives with Al, her significant other, and has two daughters. Diagnosed in 1993, she can trace MS symptoms back as far as 1984. She is currently ambulatory and uses no aids (such as a cane or wheelchair. Most of her symptoms are related to fatigue and cognitive function. Her physical problems are mild so far, with some numbness and weakness in her limbs.
Bren is the jokester of the group.
I love to hear folks laugh and to make them smile. I have the nickname "Wicked Ms. Fixit." That came about when Renee was feeling very bad after a bout with I.V. steroid treatment. I wrote her a soothing letter and talked her through some meditation to help her relax. She dubbed me "Ms. Fixit." Soon afterward, someone else said she always imagined me with not just a grin, but a wicked grin. Hence "Wicked Ms. Fixit." I really do like to fix things. I carry a mean toolbelt, when I can find the dang thing. I keep forgetting to get it out of Sally's Fridge ... [See Chapter Four].
* * *
RAMIA was diagnosed in 1997 at the age of thirty-eight. We call her "Momia Ramia" (her choice) because she is heavily involved (also her choice) with her and her husband's two children, ages six and two.
Excerpted from Women Living with Multiple Sclerosis by Judith Lynn Nichols Copyright © 1999 by Judith Lynn Nichols. Excerpted by permission.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Posted May 6, 2002
This is truly an outstanding book. As a 32 year old mother of 2 with MS, I fell easily into that fog of 'nobody really understands how hard it is'. This book easily changes everyone's thinking who reads it. I found it to be incredible in so many ways, to identify with so many individuals with MS in the book. I most HIGHLY recommend it to anyone curious about the disease, those who know someone with it and to those suffering thru it.Was this review helpful? Yes NoThank you for your feedback. Report this reviewThank you, this review has been flagged.
Posted January 31, 2000
I am newly diagnosised with MS (only 4 months). This book was just the thing I needed. It gives an intimate look at what they have gone threw. It is nice to know I am not alone. Thank you JudithWas this review helpful? Yes NoThank you for your feedback. Report this reviewThank you, this review has been flagged.