Multiple Sclerosis - Chapter 1

C H A P T E R

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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 everything 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

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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 mystery 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 discount 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.

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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 having 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 imaginary or not, to Jayne the fears felt completely real. She could barely concentrate on work while she waited for her appointment to see the neurologist.

Jayne’s fears turned out to be unwarranted. The neurologist 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 adulthood. 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 narrow, 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. . . .

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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 dining 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 mummification 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

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an unusual tremor. Charcot was intrigued because the tremor was combined with slurred speech and abnormal eye movement. 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 sclerosis—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 clinical research, to help researchers better understand what multiple 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 person’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 diagnostic procedures.

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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 medicine, 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, primal, human needs, such as bladder and bowel function, swallowing, 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

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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 assimilate 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 messages 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 symptoms 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.

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• 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. . . .