C H A P T E R O N E

What Is Multiple Sclerosis

—and Why Did It Happen
to Me?
No, I never wished for MS. Just like no one would
wish for cancer or any other disease. But I have it.
It’s a fact of my life. What can I do? Crumble and feel
sorry for myself? Or try to live well and strong
and with dignity. I choose the latter. I just need
to know how to do it. . . .
—A 32-year-old mother of three
recently diagnosed with MS

When Jayne left the advertising agency on Michigan Avenue,

she wanted to run all the way down the stairs. She wanted to
shout and dance and wave her arms with glee. She got it! A
job with one of the biggest advertising agencies in Chicago. It
was an entry-level position as an assistant to an account
executive, but she didn’t care. She’d work hard, learn every-
thing she could, and who knew where she might end up. The
agency had branches all over the world. Maybe she would
head the Paris office. Or set up accounts in Melbourne,
Australia. Who knew!
Everyone Jayne called was impressed with her good news.
After all, she’d just graduated from the University of Chicago
less than two months ago, and even with layoffs, stiff com­
petition, and her lack of experience, she snagged the job.
Jayne’s world was definitely looking good right about now,
just about perfect—except for one thing. A minor thing, a

9
10     Multiple sclerosis: A new journey

slight thing, something she didn’t even bother mentioning to

her roommate or her boyfriend.
It was her eyes. When she read over the letters she’d typed,
or notes about a new ad campaign, or even one of the mys-
tery novels she loved so much, she felt this ache in her left
eye. Not exactly in her eye, but behind it, as if it were in her
head. She also noticed that she had trouble reading with her
left eye; the words blurred, and her vision dimmed.
But Jayne had just started her new job. There was so much
to learn, so much to do. She chose to ignore the problem. It per­
sisted, however, and finally Jayne called her eye doctor. The
first available lunch-hour appointment was not for two weeks.
During those two weeks, Jayne was tempted to cancel her
appointment. Although her eyes bothered her a lot in the
beginning, she now barely felt any pain. It was probably a sty,
or strain, or just nerves.
But Jayne kept the appointment. Her parents had taught
her to take good care of her eyes and encouraged regular eye
exams. So, two weeks later, feeling slightly ridiculous, Jayne
came into her eye doctor’s office.
Her ophthalmologist listened to her story; he didn’t dis-
count her problems at all. Instead, he gave her a thorough eye
examination, peering at the back of her eyes after her pupils
had been dilated for maximal viewing. He noticed a slight
swelling of the optic nerve; a visual field test showed an
enlargement of the blind spot, the area of the retina that is
attached to the optic nerve.
The ophthalmologist put down his diagnostic tools and
told Jayne what he’d suspected when she’d first told him her
story: She had optic neuritis—an inflammation of the optic
nerve, a bundle of nerve fibers that transmits images from the
retina to the parts of the brain associated with vision.
 what is multiple sclerosis?     11

Jayne was relieved—at least initially. When she had first

experienced her eye pain, she was terrified that she had a
brain tumor. She didn’t have cancer and she knew that her
problems weren’t “all in her head”. She could breathe again
and go back to enjoying her life. After all, the problem had all
but disappeared, and with some anti-inflammatory medicine,
she’d be as good as new!
Wrong. Her ophthalmologist went on to tell Jayne that
optic neuritis is a possible sign of multiple sclerosis, that she
had a 50% chance of developing MS. He wanted her to see a
neurologist.
Jayne was devastated. Her perfect life was falling apart.
All she could think about was Mrs. Forester who lived next
door to her parents. Mrs. Forester had been in a wheelchair
as long as Jayne had known her; she sometimes slurred her
speech, and she looked old before her time. And Mrs.
Forester had MS! Would that be Jayne’s fate as well?
Goodbye advertising job. Goodbye getting married and hav-
ing a baby. Goodbye traveling and seeing the world. . . .
Jayne was being overly dramatic, letting her imagination
get the best of her. There was a reason her dad always kidded
her about being “an actress in a Greek tragedy”. But imagi-
nary or not, to Jayne the fears felt completely real. She could
barely concentrate on work while she waited for her appoint-
ment to see the neurologist.
Jayne’s fears turned out to be unwarranted. The neurolo-
gist had an MRI brain scan performed, and there were no
other lesions (abnormal spots) present in her brain. She
couldn’t have multiple sclerosis because she did not have
multiple lesions.
But Jayne was only 21 years old. It was possible that she
could develop MS down the road. She would have to learn to
12     Multiple sclerosis: A new journey

live with a certain amount of uncertainty; she would have to

make regular appointments with a neurologist.
Jayne still enjoyed every moment of her life, perhaps even
more so. But she had also grown up, taking responsibility for
herself. She spent some of her leisure time learning about
MS; she tried to live a healthy, fit life.
Although uncertainty was in Jayne’s cards, she had taken
control of her life. Uncertainty was merely another factor, like
career goals, next year’s vacation, and favorite foods. It didn’t
loom large. Jayne had fought her fear—and she had won.

Jayne’s story is a typical one. Multiple sclerosis usually

begins with a single episode—usually involving the eyes or a
“tingly, numb” sensation in the hands or feet—in early adult-
hood. Fifty to 70% of all people who experience optic neur­itis
go on to develop MS. In some cases, it might be years before
an episode reoccurs—or never. On the other hand, it might
reoccur only one month later. MS is an unpredictable disease.
Its complexities, its refusal to stay on the straight and nar-
row, can make it difficult to diagnose.
But early diagnosis is crucial to have an impact on the pro­
gression of MS. Is this a Catch-22? A no-win situation? No.
Today we know specific facts about MS; we can catch it early
and, even better, treat it aggressively before it gets worse.
Knowledge is key—your doctor’s expertise and your own.
This chapter will give you a clear picture of MS: what it is and
what it is not.
Let’s start with what might have been MS long ago—as we
take a step back in time. . . .
 what is multiple sclerosis?     13

A HISTORY LESSON

Although multiple sclerosis—and neurological disease in

general—were unknown terms until fairly recently, there’s
evidence that multiple sclerosis may have been with us for
centuries.
The ancient civilizations relied on superstition and magic
to “cure” people and exorcise the “evil spirit” who, in their
minds, caused a young pharaoh to, perhaps, hobble with a
cane, or, say, an aristocratic young bride in Pompeii to slowly
lose her ability to see the colorful murals painted on her din-
ing room wall. In reality, the evil spirit was most likely an
episode of MS.
Even the ancient Egyptians, who observed and carefully
analyzed scientific methods, believed it was the heart that
was the center of a person’s personality; it was the heart, they
believed, that gave people the ability to think. The brain, and
any possible lesions, was discarded during the mummifica-
tion process.
Documents from the Middle Ages are more specific. They
describe people who have multiple sclerosis: slurred speech,
uneven gait, tremors and numbness, loss of sight.
These early descriptions can only come to us in broad
strokes. It wasn’t until the 19th century, when scientific
methods were adopted, written down, and scrutinized, that
multiple sclerosis officially made its way into the annals of
medical disease.
In 1868 Jean-Martin Charcot, often called the “father of
neurology,” happened to examine a young woman who had
14     Multiple sclerosis: A new journey

an unusual tremor. Charcot was intrigued because the tremor

was combined with slurred speech and abnormal eye move-
ment. He couldn’t help the young woman, but when she died,
he performed an autopsy and discovered the characteristic
plaques, or lesions, in her brain that we now know signal mul­
tiple sclerosis.
But Dr. Charcot was not only intrigued with multiple scle-
rosis—he was also frustrated. He had no idea how a person
contracted MS. Nor did he know how to treat it—and he tried
everything: electrical stimulation, strychnine, gold and silver
injections, all the treatments that were used to help nerve
disorders.
But Dr. Charcot was hindered by his times. There was only
so much he could do to understand the disease. It would take
the 20th century, with its advances in biotechnology and clini-
cal research, to help researchers better understand what mul-
tiple sclerosis was—and how it eroded the nervous system.
Almost an entire century passed from the time the first
nerve cells were visually enhanced under a microscope to the
clinical trials that proved that MS episodes could be relieved
with steroids. In between were many relevant discoveries,
including the role of myelin, the sheath that “covers” almost
every nerve cell; genetic properties that may make a person
predisposed to disease; and viral attacks that turned a per-
son’s own immune system against itself.
Fast forward to 1984, in England, when the MRI—a
machine that could show brain abnormalities better than any
x-ray—was perfected. Now multiple sclerosis lesions could
be easily identified and pinpointed; they appeared right there
on the computer screen in stark black and white. Finally MS
could be recognized for what it was through simple diagnos-
tic procedures.
 what is multiple sclerosis?     15

By the 1990s the extremely effective “ABC + R” drugs were

approved by the Food and Drug Administration, and a whole
new generation of people with MS learned new facts and
envisioned new hope.
A long way from the ancient days of hobbled young
­pharaohs and nearly blind toga-wearing matrons.

SO . . . NOW WHAT?
Now that you’ve traveled back in time and learned how it
emerged as a real disease, it’s time to understand exactly
what it is. Thanks to all those inroads in science and medi-
cine, we now have some answers.
MS is one of the most common neurological diseases
around—and yet its exact cause is not known. Scientists
believe it is a combination of a pre-genetic disposition and a
trigger from the environment, perhaps a virus that attacks the
immune system and turns it against the nerve cells in your
body.
Any disease that affects the central nervous system (CNS)
is insidious—and multiple sclerosis is no exception. The CNS
is made up of the brain and the spinal cord. Together and
apart, they govern the way we think, the way we move, the
way we speak. The CNS deals with the sublime by creating
the images we dream and providing the strategies to make
them real. On the other hand, it also dictates our basic, pri-
mal, human needs, such as bladder and bowel function, swal-
lowing, and sexuality.
Unlike a brain trauma or a spinal cord injury, nerves are
not suddenly severed in MS, creating abrupt disturbances
in the way messages are sent to and from our spinal cord
and brain. Instead, multiple sclerosis attacks the myelin, or
16     Multiple sclerosis: A new journey

insulation, that surrounds most nerve fibers in our central

nervous system. This myelin helps makes messages course
through our brain much more efficiently; it makes sure the
message, “Ouch, the stove is hot. Take your finger away!” is
sent to your thumb much faster. It helps the brain assimi-
late the message, “What a gorgeous guy. I hope he looks at
me,” much faster so that you can quickly understand and
act: “Smile and wave now—before he turns away!”
When this myelin becomes inflamed or erodes, these mes-
sages are sideswiped. The electrical impulses that carry these
messages to the brain don’t always make it—or they make it
much less efficiently. Symptoms, like Jayne’s optic neuritis,
or tremors, or cognitive difficulties, can crop up.
But multiple sclerosis doesn’t happen overnight. It is a pro­
gressive disease. The “multiple” refers to multiple episodes—
as well as multiple lesions in the brain. If you only have one
lesion, like Jayne, you may not have multiple sclerosis. It may
take time to know for certain.
Multiple sclerosis also takes a circuitous route. Unlike a
tumor, which continues to grow, or a bruise that starts to
bloom black and blue, MS may stop, then not reoccur for
years. Or it may leave residual symptoms—that get worse
with each ensuing episode. On the other hand, serious symp-
toms might show up right from the start.
Why? We’re not sure—but we are learning. According to the
National Multiple Sclerosis Society, today we do know that:
• Multiple sclerosis usually first strikes between the ages
of 20 and 50. It is rare before the age of 15 and after 60.
• Twice as many women get MS than men.
• MS is rare in African-Americans and other ethnic
groups. It is most common in those of northern
European ethnicity.
 what is multiple sclerosis?     17

• MS is the leading disease-causing disability in young

people today.
• The further north you live from the equator—and the
further south—the more likely you are to develop MS.
• If you move from a northern state, say Michigan for
example, to a southern state, such as Florida, before
the age of 15, your risk is as low as a Florida native . . .
• But if you move from a northern state after the age of
15, the risk remains high—wherever you live.
• Within 15 years after symptoms first appear, 50% of the
people with MS will need help in walking, either by
using a cane, a wheelchair, or a scooter.
• If detected early—right after the first episode—MS can
be treated aggressively and often successfully.
Yes, MS is a serious disease. There is no doubt about it. But
we can try to do something about it. However, before we can
understand and fight a disease, we have to know its roots. We
have to know how it affects our bodies—and where. Thus,
we first need to see how the brain and spinal cord work in
tandem. We need to know what the immune system is and
how it works.
Putting these pieces of the puzzle together will help you
navigate your own MS journey more effectively. It will help
you understand in depth what multiple sclerosis is—and
what you can do to stop it in its tracks.
Get ready for anatomy lesson 101. . . .