Tuesday, January 28, 2003 - 11:58 a.m. Pacific
By Linda Baker
Special to The Seattle Times
Two and a half years ago, my hands and feet started to feel numb and tingly. Mysterious stinging sensations crept along my spinal cord and the back of my head. My chest and rib cage tightened as if I were wearing a corset. Over the next three months, all these sensations spread steadily throughout my entire body, up my arms and legs, all at once, as if tiny ants had been let loose beneath my clothes.
At first I wrote off these nagging conditions as the minor aches and pains of working motherhood. As a free-lance journalist, I spend endless hours in front of the computer. And so, when my arms felt numb, I thought I might have developed carpal-tunnel syndrome. When the hand I was using to support my 4-year-old son on the monkey bars suddenly lost strength one afternoon and almost sent him tumbling, I dismissed the incident as domestic wear and tear, the kind of thing that happens when you're constantly lugging a couple of small but chunky children to and fro.
I began taking vitamin supplements, exercising with more enthusiasm, all to stem the rising tide of panic that washed over me with the appearance of each new symptom. But when a dizzy spell hit me, forcing me down to the floor, I finally headed for the emergency room, thinking it must be a stroke or a brain tumor.
That was the day I was told that maybe, probably, perhaps I had multiple sclerosis. The doctor was direct, but not definitive. My situation was cloudy. There was nothing we could do, he said, but see if the symptoms worsened.
Searching for answers
I sought a second opinion, and then a third. The subsequent answers were more straightforward, but failed to offer any comfort, either. "Go home and live your life," was what Dr. James Bowen, an MS specialist at the University of Washington, suggested.
After looking at my lab tests, he assured me there was only a 5 percent chance I had MS. Dr. Ruth Whitham, a professor of neurology at Oregon Health and Science University, put my chances at 25 percent. Listening intently to my case history, she said the risks would increase if my symptoms didn't disappear in six months. They didn't — but as of now, no one is still quite sure what my prognosis is.
Like most people, I already had a vague notion of what MS was. So much has been done to spread awareness of the disease, which is widely considered to be an autoimmune condition that damages and ultimately destroys myelin, the insulating material that protects nerve fibers in the brain and spine. As vicious as multiple sclerosis is, the battle to cure it has become quite a glamorous cause. Pharmaceutical companies, celebrity foundations, and nonprofits have poured millions of dollars into research. Last year the Race to Erase MS collected around $3 million at its annual gala in Los Angeles. The National Multiple Sclerosis Society raised a record $158 million in 2000. And the momentum keeps growing.
What other people and I hadn't realized, however, is that MS is not simply a disease, but a state of limbo. The symptoms are varied, and may include abnormal fatigue, impaired vision, loss of balance and muscle coordination, slurred speech, tremors, stiffness, bladder and bowel problems, difficulty walking, short-term memory loss, mood swings and, in severe cases, partial or complete paralysis. There is no single clinical or laboratory test for MS, and diagnosis can sometimes take years. One of the great mysteries of MS is why the disease can take a mild course in one person, but a more severe one in another.
"Variability is the key word," said Stephen Reingold, Ph.D., vice president for research at the MS Society. The symptoms may also be seen in many other conditions, including the latter stages of lupus and lyme disease, stroke, and a variety of metabolic disorders and infections of the nervous system. People with MS, he said, often live with a "lifetime of uncertainty."
When the myelin is attacked, the lesions that are formed on the brain or spinal cord can be detected with magnetic-resonance imaging (MRI). But in my case, the test results revealed no lesions, so I could not walk away from the doctor's office with an official diagnosis.
Living in 'health purgatory'
As a reporter, I've documented my share of illnesses and disasters, but what to do when symptoms don't really constitute a disease? My mysterious condition sent me on a hunt for causes, rather than cures.
When I began my research, I quickly noticed that while there are many promising investigations occurring throughout the country, some of the most intriguing ones rest in the hands of some very determined women. One might say that his is to be expected: Women tend to think and work more collaboratively than men, and only an interdisciplinary approach — one that involves a team of clinicians and scientists, neurologists, pathologists and even gynecologists — could stop a complicated disease like MS. Meeting these innovators, and learning about their progress, finally gave me the solace I was seeking.
Health purgatory is a bizarre place to be. I am at once elated at the possibly that I might not have an incurable disease and, at the same times, terrified of what my next symptom is going to be and when it's going to strike. As I wrestle with my condition, my work has ebbed and flowed. My lowest point occurred when I woke up every morning for weeks, feeling my legs to make sure I wasn't paralyzed. I was supposed to cover the 1999 World Trade Organization protests in Seattle, but then I backed out at the last minute — the first time in my career I had ever done so.
Over time, I got used to the bouts of numbness and tingling. The occasional weakness doesn't interfere with my reporting anymore. But as I read to my children and walk to the grocery store — things I no longer take for granted — unanswered questions still tumble in my head. What do I tell current and future employers? Should my husband and I make sure the new car we buy is an automatic, not a stick shift?
One pioneer who might ultimately lay these questions to rest is Dr. Claudia Lucchinetti, associate professor of neurology at the Mayo Clinic. She is just 38, but already a seasoned veteran. Her research interest in MS began almost a decade ago, when one of her patients, a 30-year-old mother of several children, died after suffering from an extremely rare and aggressive form of the disease. "I grew attached to her and her family during those few weeks," she says. "In an attempt to try and make more sense of what had happened, I ended up studying her brain."
That fixation grew into an investigation into many more MS cases — ultimately yielding about 450 tissue samples from all over the world. Now Lucchinetti is lead investigator of what is known as the MS Lesion Project, a five-year study with collaborators in Vienna and Berlin. "We're trying to figure out why people with MS experience the disease so differently," explains Lucchinetti. "Our hypothesis is that it has something to do with the way lesions are formed in the brain."
There are no vats of floating cerebellums in her lab; rather, the brain tissue is processed and embedded in paraffin, sliced thick, and mounted on slides. This has allowed her to examine the lesions more clearly and break them down into distinct patterns based on the nature of tissue damage and the presence of different immune cells.
So far, her findings have reinforced what scientists have long suspected, but haven't been able to prove: that MS is probably not a single disease but a constellation of diseases with different causes.
The first two of the four patterns she found suggest that myelin may be the target, while the other two imply that the cells that make myelin are what is attacked. This discovery, along with other clues, indicates that an autoimmune mechanism may be at work in some patients, while something that acts like a virus or toxin may be the problem in others.
Her conclusions may help explain why the current drugs used for treatment will reduce the volume of lesions and stem disease progression in some patients, but not others. My doctor says he's actually seen people get worse on the medication. Indeed, when I sat in on an MS support group in Portland last year, one man extolled the virtues of one of the commonly used brands, saying it had reduced the frequency and severity of his relapses, while a woman sitting across from him begged to differ. "That's what put me here," she said, pointing to the motorized scooter she now relies on to get around.
Pregnancy eases symptoms
By some accounts, at least 1 million Americans have been diagnosed with MS, but because the symptoms are often undetectable, any statistic is only an estimate. And while MS is not considered a young woman's disease, more than twice as many women as men have it, and it's the most common debilitating neurological disease afflicting those between ages 20 and 50.
I first started experiencing symptoms when I was 34, though I can't help thinking back to any number of odd sensations occurring before that and wondering if they were significant. For example, when MS was no more than a blip on my radar screen, I met a recently diagnosed woman whose first symptom was that her hands hurt for several months after childbirth. At the time, I was a new mother myself, and my own hands had also ached. I had called the doctor but was told that the pain was caused by all those hours clutching the baby to my breast.
Perhaps I might not have taken that response for granted if, at the time, I had met Dr. Rhonda Voskuhl, 42, who, like Lucchinetti, stands at the forefront of research. The Oklahoma native and associate neurology professor at the UCLA School of Medicine has been getting e-mails every day about a neat little study she and her colleagues just wrapped up.
"I see patients like you all the time," Voskuhl told me in her deep drawl. "It might be MS, but you're just going to have to wait and see."
Her study grew out of clinical observations showing that pregnant women with MS go into remission during their pregnancy, yet relapse within six months postpartum. (See related Jan. 12 article, " A new mother's nine-month vacation from MS ".) During pregnancy, she explained, the mother's immune system temporarily shifts from what's called a cell-mediated response (in which armies of white blood cells attack any foreign or infected cells) to an antibody-mediated response. In this state, the baby — considered a foreign body because it contains the father's genes — is safe from being annihilated by its mother's immune system.
In MS, the body mistakenly identifies its own myelin as the enemy and attacks it. Voskuhl speculates that the reason a pregnant woman with MS might go into remission is that while the shift in her immune system during pregnancy suppresses attacks on the baby, it also happens to suppress attacks on her own body, including her myelin.
Voskuhl chose to focus on the hormone estriol because it soars to very high levels during the third trimester and drops immediately at birth — making the perfect candidate for signaling the body into MS remission. Voskuhl's hope is that if estriol is administered to a non-pregnant woman, it could induce the immune changes caused by gestation and provide some protection against the disease. "It just made so much sense," says Voskuhl, who drew her own blood when she was pregnant to figure out the correct amount of estriol to use.
It turns out that Voskuhl's results, like Lucchinetti's, bolster the notion that MS may have more than one cause: Estriol reduced the volume of lesions by 80 percent in women with relapsing-remitting MS (the episodic sort), but had no effect on women with the secondary, progressive form. "That shows there's probably a completely different mechanism at work," Voskuhl says, though she is quick to point out that hers is but a pilot study, and that the results need to be confirmed with large-scale clinical trials.
'Pushing past the uncertainty'
MS, I've come to believe, is like Alice in Wonderland's rabbit hole: Plunge deeper, and things get curiouser and curiouser. When I spoke with Reingold at the MS Society, he said that — at least in adults over 50 — you can be "clinically normal" with no symptoms, and yet your MRI or autopsy may show lesions indicative of MS.
"But this is like the tree falling in the forest with nobody hearing it," he says. "If they don't really have symptoms, do they have the disease? The disease is a clinical problem."
Indeed, with MS, the distinction between illness and wellness is not always black and white. Or, as more than one neurologist has told me, it is less about the physical evidence than the stories people tell about themselves over time.
Last year, a study in the New England Journal of Medicine reported that while 88 percent of patients with abnormal MRIs went on to develop the condition, 19 percent of patients with normal MRIs at the onset of symptoms also eventually developed clinically definitive MS. It is a finding that in the past would have given me pause, but I've long learned to push past the uncertainty.
Last year, when an editor — the same one who assigned me the World Trade Organization protests — asked me to write about ecotourism in Belize, I got on the plane. I knew that the heat might exacerbate my symptoms, but I put all worries aside, sporting an "Out of Africa"-style sun hat and strapping on the Camelbak my husband had purchased to keep me cool. I trekked through the jungle, went cave tubing, and sweated out the tropical nights in thatch-roofed huts without air conditioning. Except for mosquito bites, I returned home unscathed, my brain brimming with stories and alive with possibility.
Linda Baker is a free-lance writer living in Portland. This article
first appeared in the November 2002 issue of Vogue.
Copyright © 2003 The Seattle Times Company