MS Poster Child? I'm Your Gal
By Jennifer Huget
Tuesday, August 28, 2001 a funny thing happened to me on April 2, kind of a belated April Fool's joke: My neurologist told me I had multiple sclerosis.
For weeks I had found myself fervently praying that I had Lyme disease, whose symptoms sometimes mimic those of MS. No such luck. An MRI scan, a spinal tap and blood tests, none of them individually conclusive, together pointed to the fact that my body had decided to start attacking itself. Apparently thinking they are doing the right thing, certain misguided cells have taken it upon themselves to destroy the fatty myelin sheath that coats the nerve cells in my brain, leaving scars that prevent the nerves from doing their jobs.
Why, I wonder, couldn't they attack the fatty cells in my thighs instead?
As it stands, I have to get used to the idea that my favorite organ is under siege, and that there's not a lot I can do about it. Despite huge technical advances in the last decade, despite the introduction of new drugs that might help slow the disease's course, despite the heroic efforts of doctors and researchers all over the world, MS remains poorly understood. Nobody knows what causes it. Nobody knows how to prevent it. And nobody knows how to make it stop.
More than 350,000 Americans have multiple sclerosis (which means many scars). Nearly two-thirds of these are women. Most people are diagnosed between ages 20 and 40, but plenty of people get it much earlier or much later. For mysterious reasons, the disease almost exclusively strikes those who live in temperate climates or, as some believe, those who lived in such areas before the age of 15. It's unclear whether its incidence is on the rise or whether advances in its detection (primarily through the increased use of the MRI) are helping to identify more cases.
Once it's chosen a victim, MS destroys randomly and indiscriminately. Some people temporarily or permanently lose their vision. Some lose control of whichever muscles are governed by the nerve cells that have been attacked. Sometimes the damage is permanent. Other times the myelin manages to regenerate spontaneously and the symptoms vanish.
Some people -- those with "relapsing/remitting" MS -- suffer occasional attacks followed by periods of recovery. Some suffer but a single attack, or exacerbation -- a worsening of symptoms -- and never hear from their MS again. Others, those with "primary progressive" MS, go downhill fast, with unremitting exacerbations sending them swiftly into wheelchairs or causing them to go blind. Even those whose symptoms remain mild suffer psychologically and emotionally. In fact, depression is one of the major side effects of MS, one that's probably caused not by the nerve damage itself but by the uncertainty, the constant waiting for the other shoe to drop. Getting MS is pretty much like being forced into a game of Russian roulette that lasts for the rest of your life.
MS is getting a lot of media attention lately, the general gist of which is how promising the research is, how hopeful we with MS should feel. To be sure, hopeful is better than depressed. But the cheerleading masks the central fact that there is still no cure for what everyone agrees is a devastating disease. And there won't ever be a cure if a lot of people don't stay focused on the need to develop one.
MS has an image problem. While several minor celebrities (Annette Funicello, Alan Osmond and Montel Williams, for instance) have MS, they are not, individually or collectively, visible enough to attract much public attention or sympathy. Parkinson's disease has the adorable Michael J. Fox. Spinal cord injury has superhero Christopher Reeve.
MS has, bless his heart, Squiggy.
David Lander, the actor who played Squiggy on TV's "Laverne and Shirley," has recently written a book about his experience with MS. Hear anybody talk about it lately? Me neither. And I've been listening hard.
What MS needs is a poster child. In the absence of somebody more famous, attractive and compelling, I hereby volunteer.
My MS and Welcome to It
I hadn't given a lot of thought to the tingling in my left fingertips and toes: I figured it had to do with my exercise routine or my typing for hours every day. At my 40-year checkup, I mentioned the tingling to the doctor (not my regular primary-care physician), who asked if it seemed to go away when I shook my hand. I'd never noticed, but she didn't seem too concerned, so neither was I. Until, a few weeks later, I experienced some chest pain.
Chest pain plus tingling left fingertips? Sounded like heart trouble to me. This time my regular doctor saw me. No, it wasn't heart disease, and the chest discomfort was just my acid reflux acting up. As for the tingling, she recommended I get checked for carpal tunnel syndrome.
The neurologist who conducted that test turned out to be the one who would treat me for MS. After poking me with lots of needles, he ascertained that I didn't have carpal tunnel. I couldn't figure out, at the time, why he looked so solemn as he delivered what I thought was good news. Afterward, I spoke to my regular doctor, who said, well, the next thing would be to have an MRI, which she called the "gold standard."
Why would I need an MRI, I wondered. But I didn't ask, just brushed off the suggestion. It wasn't until a week later that, during a stressful business meeting, the side of my face started to feel (but not look) tight, the way a patch of skin coated with glue feels after the glue dries. When I got home, I typed my symptoms into Yahoo's search box. When the only things that turned up were MS sites, my heart pounded and I felt flushed. Though I've been an inveterate, expert, lifelong worrier, this was one disease that had never occurred to me. I called the doc and scheduled an MRI.
The Magnetic Resonance Imaging device itself isn't as bad as you'd think: They give you earplugs, take away your jewelry and have you lie down in a tube. The whole experience only takes about 15 minutes. But the horrible thing in my case was that, through the tiny window in the MRI chamber, I could see the technicians in their booth outside, studying the images of my brain as they appeared on the screen. You know the news isn't good when they point at the screen, frown and furrow their brows.
I'm ashamed to report that I made a bit of a scene. I screamed and cried in the car the whole way home. Then I prodded and pushed to have that MRI read right away, sooner than the system normally allowed. I called the hospital the day after the test and persuaded the desk clerk to pull my chart and read the radiologist's scribbled notes. "Multiple white-matter lesions" was all I needed to hear.
Damn, I thought, I have MS.
White-matter lesions -- patches of scarred tissue that appear on an MRI as bright spots in your brain, almost like cartoon images of brilliant ideas -- don't necessarily signal MS. To make a positive diagnosis, you need to follow up with a spinal tap (formally known as a lumbar puncture) to search for proteins characteristic of MS and bloodwork, which, among other things, helps rule out Lyme disease.
Lyme disease? Why, of course! After all, I live on three wooded acres in the state where the tick-borne infection originated. My tick-bearing dog sleeps in the crook of my legs every night, for heaven's sake. I found myself clinging to the hope that I had this and not the other ailment. While both can be awful, Lyme disease has one advantage over MS: Antibiotics almost always can cure it.
The best-kept secret among those in the know is that a spinal tap sounds so much worse than it is. You curl up on your side on a hospital bed while your neurologist -- suddenly I have a neurologist! -- numbs you with a local anesthetic and then draws fluid from a carefully selected spot between your vertebrae. Some people get a terrible headache afterward, a pressure-driven one that won't respond to painkillers. I was spared this.
The weeks following the spinal tap were good ones; some mechanism in my brain (the part that was working properly) allowed me to believe wholeheartedly that I had treatable Lyme disease. The last Friday in March, the neurologist's office reported that some -- but not all -- of the spinal tap results were in, and they were all negative -- meaning good. I didn't even allow myself to dwell on the fact that included in those negative results were the Lyme tests. I'll always remember that weekend, fondly, as the last one during which I didn't have MS.
All that changed on Monday morning. My neurologist called to tell me that the rest of the tests were in, and that, yes, I did have MS. Drawing lingo from outdated information I'd pulled from one of the hundreds of MS-related Web sites I'd pored over, I asked whether this was a case of "probable" MS. No, he said. This was definite. I'd better come in and get started on treatment.
My New Drug Habit
My husband and I sat across the examination room from the neurologist, waiting for him to say something reassuring. He tried: He pointed out that lots of people have MS and you'd never know it. That lots of people are doing really well on the new drugs. That one of his patients is about to backpack across Europe, carrying his medication with him. But he also was obliged to remind me that everybody's experience with MS is different and that there is absolutely no way to predict the course of the disease. My mild symptoms didn't necessarily bode well. They just didn't bode, period.
Had my Internet research been more thorough and I less distracted by terror, I would have understood that much of the data about MS on the Web predates the introduction of the three medications now prescribed for managing the disease. When you read statistics about degrees of disability -- three-quarters of patients find their ability to work impaired, more than one-quarter eventually need to use a wheelchair, for instance -- you have to remind yourself that they include all the people whose MS appeared years ago, before there were these medications or treatments for many symptoms.
As recently as a decade ago, MS diagnoses were based on a physician's exam alone and the process could drag on for months, even years. It didn't really matter much, because once the disease was diagnosed all you could do was wait for it to get worse. The current consensus is that patients should be positively diagnosed as early as possible and placed immediately on one of three drugs, the ABCs of MS: Avonex, Betaserone or Copaxone. I was surprised to learn that, whichever of these I ended up with, I'd be expected to administer it myself. I'd somehow envisioned a weekly visit to the doctor's office, like people with allergies make. Nope: I'd be shooting up alone.
Though Avonex, a weekly, intramuscular injection, is a popular MS treatment, I had read that it triggers depression in many patients. That I didn't need. So my doctor instead recommended the daily, subcutaneous Copaxone, which has minimal side effects.
The MS community enthusiastically embraces these medications as the only existing weapons against the disease. But part of me wonders how much good they really do: They don't claim to halt MS's progress, only to reduce the number of exacerbations. People taking MS drugs still have relapses. The thought is that by cutting down on the number of attacks, you can ultimately reduce the amount of permanent damage. But since you can't know how many attacks you might have had without the medication, there's no way to tell whether the drug is having any effect.
My husband and I agreed not to tell family and friends about my diagnosis until I'd started my Copaxone and created a new status quo. Patients taking Copaxone have access to a service called Shared Solutions, which arranges to have a nurse come to your home and help you with your first injection, just to be sure you do it right -- and to be on hand in case you go into anaphylactic shock. I had to wait a bit, as the nationwide nursing shortage hit home: There wasn't a nurse available to come help me right away. Soon, though, a lovely woman saw me through the first shot; as she left, she hugged me and said she'd pray for me.
So Here I Am
MS has its advantages. For instance, it's helped me discover my true calling as a junkie. I mix my drug and shoot up at 6 a.m. daily. I'm pretty good at it, and the practice gives me the illusion that I have some control over the disease.
I thought my kids (ages 4 and 7) would be traumatized by watching Mommy stick herself with a needle, but they quickly grew bored, particularly as there was no crying and little blood involved. The shots are so routine now that we think nothing of, say, stopping by an abandoned kiddie park off Route 66 in Virginia early one morning during a vacation so I can do my thing in the parking lot. My next challenge is to try taking my shot in a moving car.
Once I stuck the needle into an arm muscle, which reacted by twitching and aching for the rest of the day. After that I started using the Autoject, a clever, sheath-like device provided by Shared Solutions that hides the needle and keeps you from poking too deep. You insert your drug-filled syringe into the Autoject, rest it against the skin at one of the seven injection sites you rotate through each week (to prevent the skin from toughening) and press a button. Presto! You're done. Until the next day.
Some people suggest that the first thing you do once you're diagnosed is to join a support group. Never a team player, I was relieved that my neurologist didn't push me in that direction. I sense that such groups inevitably attract the worst cases, and spending time with them might give me a skewed and depressing vision of my own future. Instead, my doctor (and many others) suggests trying to just get on with life, to not dwell on the disease or try to predict what might happen tomorrow or the next day. In fact, I remind myself, none of us knows whether we'll get hit by a bus tomorrow. I take comfort in that.
Every so often, when I forget something or say something that makes no sense, I get scared that the cognitive lapses associated with MS have suddenly set in. "No," my husband reminds me, "you've always been that way." I still have tingling and tight skin once in a while, but mostly when I'm tired. People with MS often experience debilitating fatigue; I'm actually glad to know that the exhaustion I'd so frequently felt during the past year has a physical cause, that it isn't all in my head (well, actually, I guess it is) or somehow my fault. I'm grateful that, as a self-employed writer, I don't have the kind of job in which I have to worry, as so many MS victims do, about discrimination or about eventually becoming unable to do my work.
I've learned who my friends are -- and, thankfully, they're exactly who I thought they were. I've learned that the best thing to do for someone who has crossed over from the realm of the well to that of the sick is to say, "I know you can handle this," instead of showing pity. Pity just makes me cry -- and reminds me that I'm in a position to be pitied. (Several of my closest friends, knowing that I write health stories, responded to my news by suggesting I lay off the primary research, heh-heh.)
These days I measure the quality of my day by the number of times it crosses my mind that I have MS. Some days I make it until dinnertime or so without giving it a thought. This is, I know, a luxury afforded by the relative mildness of my symptoms; I imagine that if I couldn't walk or see, I'd be thinking about MS pretty much every minute. Shared Solutions sends me little booklets and other mailings about once a week, sort of like a Copaxone fan club. I hate these items: They are constant reminders of something I'm trying hard not to think about.
But, of course, I do think about it. Sometimes I scour the events of my life, wondering what might have caused this. Was it something I was born with? Or something that happened way back when I was Jenni LaRue, growing up in Rockville? Most scientists think it's a combination of genetic predisposition and environmental trigger -- perhaps a slow-acting virus. Some people believe the artificial sweetener aspartame has something to do with it. (Coincidentally or not, I drank record amounts of diet cola last summer, but stopped because I kept getting headaches. Who knows?)
Some researchers focus on the mechanisms specific to MS, while others have begun to look at the disease as just one manifestation of the autoimmune syndromes (including lupus, rheumatoid arthritis and Type 1 diabetes) that seem to be on the rise -- and that clearly have it in for women more than for men.
The good news is that, whatever it is, MS is not usually fatal. Debilitating, devastating, depressing, maybe. But not deadly.
People with serious illnesses should be allowed a moment to stand on a soapbox and shout the lessons they've learned. I'll quit after just one: MS or no MS, life is shorter than you know and absolutely unpredictable. It's also filled with sweet moments, ones you miss if you speed from activity to appointment to task. Since I was diagnosed, I have mindfully spent more time playing with the kids, scratching the dog's belly, reading books I've always meant to read. When you're feeling okay, it's easy to fall back into the frantic routine, but I try to catch myself before that happens.
Sick or well, we all need to carpe that old diem. Fast.