Living with the uncertainties of multiple sclerosis
Multiple sclerosis affects everyone differently, so each diagnosis story is unique. This is mine: In April of 2002, I started seeing dots -- a few spec-sized blind spots -- as if I had been staring into a bright light for too long. When they were still there a week later, I made an appointment with an eye doctor in Williston.
After my examination, she calmly explained that my eyes were fine -- the problem was with my central nervous system. She scheduled me for an emergency MRI.
That's when I started to put it together. Maybe my vision problem was related to the tremors in my right hand. And maybe they were both related to the way I'd started stumbling over familiar words. Maybe my symptoms were also connected to the bizarre episodes of fatigue and numbness I'd mysteriously experienced over the past few years, like the time in August of 1998, when my left arm went numb from my neck to my elbow.
A few days later, I saw a neurologist at Fletcher Allen. He looked at the MRI films, listened to my medical history, and confirmed my suspicions. He told me that I probably had MS -- multiple sclerosis -- a chronic, degenerative nerve disease that most often affects women of European descent between the ages of 20 and 50; I was 27.
At first, I was relieved -- I had thought I had a brain tumor -- but that comfort was short-lived. I was familiar with MS. One of my father's closest childhood friends was diagnosed with it in the mid-1970s. Joe was 6-foot-3, gregarious and athletic. Within months of his diagnosis, he needed a wheelchair. His limbs became spastic or unresponsive. He struggled to speak. Shortly after he got sick, his wife left him and their young son. Joe is still alive, living with his mother -- MS isn't fatal -- but he requires constant care.
My doctor reassured me that my case probably wasn't as serious as Joe's. MS takes different forms in different people. Joe has the most severe type: "Primary-Progressive" MS, which, unlike the other varieties, affects mostly men, and accounts for about 10 percent of the afflicted population. I apparently have a mild form of "Relapse-Remitting" MS, the most common kind. Unlike Joe, who deteriorated quickly, I can expect to have intermittent attacks or "flare-ups," like the one that sent me to the eye doctor, for the rest of my life.
The neurologist explained that MS is related to the immune system. For reasons researchers don't understand, the MS patient's antibodies mistakenly attack the myelin sheath around the neurons in the brain. The resulting scarred areas are called "lesions."
These lesions can cause fatigue, depression, loss of vision, bladder dysfunction, loss of balance, muscle spasms, numbness, difficulty speaking or swallowing, and trouble remembering or processing information. Researchers don't know what triggers the attacks; anecdotal evidence suggests that stress may be a contributing factor.
The lesions may heal completely, or not at all. The symptoms might last a few weeks, like my vision problem, or a few months, like the tremor in my hand. They might go away, only to return years later with increasing severity. After repeated or particularly serious flare-ups, the disability might become permanent. Or it might not. The neurologist stressed that there was no way of knowing how my MS might progress, or even if it would.
How did I get MS? How would it affect me? What could I do about it? I quickly learned there aren't any definite, satisfactory answers to those basic questions. I also discovered that plenty of Vermonters have the same queries -- the state has one of the highest per capita MS affliction rates in the country. At least in part, geography may determine who's likely to develop the disease. The farther you lived from the Equator during the first 15 years of your life, researchers have deduced, the more susceptible you are. Roughly 192 out of every 100,000 Vermonters have MS, compared to 127 of every 100,000 Floridians. The National Multiple Sclerosis Society, a nonprofit that supports and advocates for MS patients, estimates there are between 1600 and 1700 Vermonters currently living with MS. The rate in Michigan, where I grew up, is also high.
Genetics also play a role -- you're more likely to develop the disease if it affects someone else in your family. But there's no MS gene. There's no definitive MS test. Diagnosing it is a process of elimination. I didn't get a definite diagnosis until several months after my first appointment with the neurologist, after the blood-test results ruled out other ailments.
More importantly, no one knows how to cure MS, or how to reverse the damage it does. And no one can reliably predict how much or what kind of damage it will do. So I might never have another attack. Or I might wake up tomorrow and be blind or unable to walk. The unpredictability of this disease is maddening.
But I've learned to live with it. One of the first things I did was write haiku about getting an MRI. One of them goes, "ya ya ya ya ya / ya ya ya ya ya ya ya / ya ya ya ya ya." That's one of the sounds the MRI machine makes. When you're lying inside its tube, the sound is deafening. Instead of being annoyed by it, I try to appreciate it. I do the same thing with my symptoms. Instead of being freaked out by my twitching thumb, I think, Wow, that looks so weird.
And yet, researchers are making progress. In the past decade, three drugs that reduce the likelihood of flare-ups in a significant number of patients have been approved by the FDA. None of them treats the symptoms of MS, or repairs lost function, but they seem to reduce the number and severity of attacks, thereby diminishing the likelihood of long-term disability.
I started taking one of these drugs a year ago. It was a difficult decision. The general consensus among MS specialists is that newly diagnosed patients should start taking something as soon as possible. But I felt my case was so mild -- why not wait to see if it progressed? I'd been eating right, relaxing, exercising more, and going to the chiropractor after being diagnosed. Maybe, I thought, the drugs wouldn't be necessary.
I had reason to be cautious. Taking MS drugs is not a matter of popping a few cheap pills over breakfast. The drugs are all injected -- some you shoot up once a week, some every day. They all have scary-sounding side effects and will almost certainly make you sick. They're also expensive; a year's supply can cost between $15,000 and $20,000. Plus, the treatment doesn't end after a year; it's a maintenance therapy, a long-term commitment.
I took the plunge for a couple of reasons. First of all, I was scared. During the summer of 2003, I got a taste of how debilitating the disease can be. Heat exacerbates MS symptoms. The second summer after my diagnosis, I experienced this for the first time. In our non-air-conditioned house, I felt exhausted, drugged -- even unable to think clearly or carry on a conversation.
At first it seemed like a few isolated incidents, but as the months dragged on and it kept happening, my partner Ann-Elise and I started attributing this paralyzing sluggishness to the MS, especially since my confusion seemed to disappear once I cooled down. It was the first time I realized my mind might be affected by the disease, not just my body -- a prospect that terrified me.
The second impetus for starting treatment was the opportunity to be involved in a drug study. MS drug trials are fairly common at Fletcher Allen, because the hospital is home base for Dr. Hillel Panitch, a neurologist and MS specialist. If you live in northern Vermont and you have MS, you probably see Panitch, a slight, wiry man with heavy-lidded blue eyes and a soft-spoken but frank bedside manner. He has more than 600 MS patients, one of whom is me.
After one of my appointments last month, I asked him why he chose to study MS. "It's an interesting disease," he observed thoughtfully. "It's complex. It involves the immune system. It looked like it was ripe for major scientific breakthroughs . . . one where I might be able to see some progress."
And he has. Panitch has participated in a number of studies, including trials of Copaxone, now approved for Relapse-Remitting MS. He's currently conducting five studies, with another three on deck.
In the spring of 2004, he told me I was eligible for a two-year study comparing two FDA-approved medications. The drug company would cover the cost of my treatment during that time, so I wouldn't have to worry about whether our insurance would cover it. It was a great opportunity.
But I got off to a rocky start with the drug -- which, because of study protocols, I can't name. On the first night, Ann-Elise helped me by icing the injection site, and swabbing it with an alcohol pad. I placed the auto-injector tube on my skin, preparing to press the button that would shoot the medicine into my body, but I couldn't do it. "I don't want to," I said, whining. After 20 minutes, Ann-Elise, started losing patience. "I've killed sick chickens with my bare hands," warned the former egg farmer. "I can hold you down and inject you."
Eventually I gave myself the shot. I turned green and almost passed out. Luckily, it was from the shock of injecting myself and not from the medicine. In the past year, I've missed some work because of flu-like symptoms, and recorded higher-than-normal liver enzyme levels, but I've tolerated the drug pretty well.
People ask me all the time how it's working. I tell them it seems to be working fine -- I haven't had any flare-ups recently. But ultimately it's impossible to know if that's because of the drug, or because I wouldn't have had any either way.
Despite my initial ambivalence about treatment, I realize how fortunate I am to have options at all. Until about 10 years ago, there weren't any. I was reminded of this last month while attending an MS support group at Fanny Allen. Bill Boyce of Underhill facilitates the MS Society-sponsored group, which has been meeting twice a month since 1993. Boyce's wife JoAnn, 60, was diagnosed with MS in 1982.
For a long time, says Bill, he thought his wife was a hypochondriac because she complained of mysterious ailments. Then one day, JoAnn fell while cross-country skiing and had trouble getting up. The next day, she called Bill at work. He came home to find that "one side of her face was sagging" and she could barely stand. He took her to the hospital, where she was diagnosed with MS. "The doctor asked me, 'Do you have faith?'" Bill remembers. "I said, 'Why?' He said, 'Because I have nothing.'"
Today JoAnn uses a wheelchair and suffers from other aspects of the disease. Although she and Bill still travel around the continent in their camper, MS has made life difficult for them. "If it wasn't for our faith, I don't think we'd make it," Bill notes.
Other than Novantrone, a chemotherapy drug so toxic it can only be taken up to 12 times in a lifetime, there are few new treatments for people with more advanced MS. Panitch oversaw a study for a promising drug called Tysabri, but it ended when two patients -- not in Vermont -- contracted a rare demyelinating disease. "There's not much we can do about restoring lost function," says Panitch, sounding apologetic, but resigned.
At the meeting, 47-year-old Jutta Viens says Panitch and other neurologists have told her "there is absolutely nothing they can do for me." Viens suffers from Primary-Progressive MS. She has muscle spasms in her left leg that make her walk slowly, with a cane. Her balance has been impaired, too -- sometimes she falls. She tires easily.
But the spirited German immigrant still works at a local veterinary clinic. She says she's discovered a natural anti-oxidant pill that energizes her. After the meeting, she does several confident push-ups to prove it. I watch her, inspired, but still rattled by what she told me before she began -- she was diagnosed in May 2002, a month after I was.
Sometimes I'm tempted to feel sorry for myself, like when I noticed recently that I've lost some feeling in my fingertips, or when I can't go for a hike on a hot, sunny day. But watching Viens, I realize how lucky I really am. Or how lucky I've been so far.