More MS news articles for May 2003
Two Years Post-Diagnosis, the Author Views 'Progress'
Tuesday, May 27, 2003
By Jennifer Huget
Special to The Washington Post
In the two years since I was diagnosed with multiple sclerosis, I've come to picture the disease as a big Sunday crossword puzzle that brainy people all over the world are working diligently to solve. Watching them painstakingly pencil answers into each row of empty squares is gratifying, but the real payoff will come only when all the squares are full, each answer confirming the correctness of the others, the interlocking pattern finally revealing itself.
It's hard to guess when that time will come; nobody's even convinced we've seen all the clues yet. And maybe the crossword model is too optimistic: MS may turn out to be more like a Rubik's Cube or some nasty form of 3-D chess, or maybe it's a riddle in some unfathomable language for which there is no Rosetta stone.
MS is certainly a harder disease to figure out than many others. Take AIDS, for instance. While that's a devastating ailment, it's also pretty straightforward in lots of ways. We know the infectious agent that causes it, we know how it's transmitted and how it can be prevented, and we know the range of symptoms it causes and how to keep many of them at bay.
MS, while far less deadly and clearly not contagious, seems more complicated and surrounded by more unknowns, and it needs to be approached from zillions of different angles before its mysteries unravel. While folks working on AIDS can focus on the (still quite daunting) problem of developing a vaccine and coming up with prevention strategies, MS researchers don't yet even have a clue what to vaccinate against or prevent.
With that complexity in mind, the National Multiple Sclerosis Society (the world's largest private funder of MS research) keeps adding to the $30 million it spends each year on more than 300 research projects, while the National Institutes of Health (NIH) lays out about $90 million a year for MS research (plus hundreds of millions more for more general research into autoimmune diseases and other related fields). There's even prize money: The MS Society is offering a $1 million prize for the scientist whose research fills in those final squares, whose work leads to development of a way to prevent or arrest the disease.
For comparison's sake, the NIH last year spent close to $600 million researching Alzheimer's disease (which the National Institute on Aging says affects 4 million Americans); it spent nearly $35 million looking into amyotrophic lateral sclerosis (ALS), or Lou Gehrig's disease (which 20,000 Americans have at any given time, according to the National Institute of Neurological Disorders and Stroke, or NINDS). So, in terms of federal dollars spent per American patient, MS (which NINDS says affects as many as 350,000 people) draws about $258, compared with $150 per Alzheimer's patient and close to $1,750 per ALS patient.
Still, that combined public and private $120 million devoted to MS research is a lot of money, and I think I speak for many people with MS when I say I appreciate all the folks who participate in MS bike rides or walks or who otherwise donate to the cause. At the same time, I feel woozy when I see the brochures for those fund-raising events. It's daunting to realize that the disease you've got is bad enough to warrant all those people's hopping on their bikes on your behalf.
Funding issues aside, the past year's research has delivered a number of intriguing (if not earth-shattering) developments, ranging from the sublime (a study showing that neural stem cells seem to repair MS-like disease damage in mice) to the ridiculous (a roundly discredited theory postulating that MS is sexually transmitted). It's been a year full of promising studies-in-progress that have yet to yield their final results. And while dozens of studies have contributed to understanding of MS and brought new treatments into the realm of the possible, there's been no single development that outshines the others in importance or impact.
In fact, the biggest event of the moment isn't a study or a new treatment. It's an anniversary, one that everybody with MS should take a moment to observe.
Until 10 years ago, people diagnosed with MS were pretty much told to go home and wait (sometimes literally) for the next shoe to drop. They were usually advised to stop exercising, as the limited understanding of the day suggested that exercise made MS worse. While some symptoms could be temporarily remedied, often through steroid injections, there was no plan for altering the disease's course. There was little emphasis on improving diagnostic techniques, because nobody knew what to do about MS when it was detected.
All that changed in 1993, when the Food and Drug Administration (FDA) approved Betaseron, the first drug shown to slow the progression of MS. With that approval, MS ceased to be an incurable, untreatable disease and became instead a condition that not only could be treated but also might have a cure after all.
Betaseron offered the first chance for people to take action against their disease -- and gave scientists cause to revisit MS. As Stephen Reingold, vice president for research at the National MS Society (www.nationalmssociety.org), says, the drug's approval "awakened people to the existence of MS, and demonstrated to even the medical community that this was a treatable disease."
Now we know so much more. Multiple sclerosis, which affects twice as many women as men, is most commonly diagnosed between ages 20 and 50. It's not directly hereditary, but genetics clearly play some role in its development. It's believed to be an autoimmune disease, one in which the immune system attacks healthy tissue in the body. Current thinking suggests that, in people with genetic predisposition to the disease, a virus may trigger this immune response.
In MS, immune cells attack and destroy the fatty stuff called myelin that coats nerves in the brain and spinal column, leaving nerves unprotected and impairing their ability to conduct impulses. In mild cases, the disruption causes annoying symptoms -- numbness and tingling, blurred vision, fatigue. More severe cases can leave patients blind or unable to walk or even paralyzed.
In the most common form of MS, called relapsing-remitting, symptoms come and go, with full or partial recovery between attacks. Most people start with relapsing-remitting MS; many progress to more aggressive forms, such as secondary-progressive, in which the disease advances more steadily with fewer remissions. In the worst cases, symptoms never let up and grow increasingly disabling. In rare instances, life is cut short, but people diagnosed with MS today are assumed to have nearly normal life expectancies.
Researchers are looking for ways to diagnose the disease earlier, to determine which form is present, and to tailor treatment accordingly. They're also working on ways to repair or replenish damaged myelin and nerves. And recent research has shown that exercise, far from doing harm, actually helps the body cope with MS.
With the introduction in the United States last year of Rebif, people with MS now have five disease-modifying drugs to choose from. Nobody's exactly sure how they work, but they all aim to intercept or suppress aggressive immune-system cells before they attack the myelin. None of the five is perfect; some have side effects, some may lose their effectiveness in a given patient over time, and none completely stops the myelin's destruction or reverses damage. At best, the drugs -- Avonex, Betaseron, Copaxone, Novantrone and Rebif -- keep us on hold while we wait for something better to be discovered.
Betaseron was recently approved for treating people with secondary-progressive MS, and Avonex can now be prescribed even before a person is definitively diagnosed with MS, a practice that's in keeping with the philosophy that early intervention might mitigate the disease's cumulative damage.
Works in Progress
Several novel approaches to treating MS have shown promising results in preliminary studies in the past 12 months:
• Antegren, which prevents immune cells from crossing the blood/brain barrier and entering the central nervous system, has been shown to reduce disease activity -- as measured by lesions, or scars, on the brain -- by 90 percent; that's lots better than the 50- to 80-percent reductions associated with existing treatments.
• A pilot trial showed that the female hormone estriol, which is elevated during pregnancy and may account for the remissions in disease activity that many pregnant women experience, reduced disease activity.
• Statins, best known as cholesterol-reducing drugs, were found to reduce the level of certain proteins associated with MS-related inflammation in the central nervous system. If this effect actually suppresses the disease, statins could be a real boon, as their safety and tolerability are well established -- and because, unlike existing treatments, which are administered by injection, they could be taken orally. But much work remains; even if statins are shown to muzzle MS, it's not clear they would be safe for people with normal cholesterol levels.
• In April, researchers published studies in which neural stem cells from adult mice were injected into mice infected with a disease that mimics MS. The stem cells were able not only to help repair myelin and decrease nerve fiber damage but even to promote disease recovery. As with any animal study, such results should be met with caution, as what works in mice isn't guaranteed to work in people.
As Reingold notes, it's too early to tell whether any of these findings will translate into treatments. "These things are promising," he says, "but there's not a breakthrough until products are shown to be useful and safe" in humans.
An MS Poster Girl
The first time I wrote about multiple sclerosis, I suggested that what we MS folks needed was a poster girl; somewhat naively and glibly, I offered myself up to fill that role. I heard from lots of other people who felt that they, too, were strong candidates for that dubious honor. But none of us -- least of all myself -- could claim the notoriety, the presence, the showbiz quality required of an effective poster person.
Okay, so maybe we didn't find a cure for MS this year. But we did find a pretty good poster girl when actress Teri Garr revealed on CNN's "Larry King Live" that she has had multiple sclerosis for nearly two decades. Teri Garr! She's so cute, so down-to-earth, so able to hold her own with David Letterman! It's hard to believe she has a chronic, potentially disabling disease. And it's really hard to pity her.
Garr, a 53-year-old former dancer, has a bit of a limp, for which she wears a brace on her right leg. She's been doing the talk circuit as a paid spokeswoman for Serono/Pfizer, the drug partnership that brought Rebif to the U.S. market, and she's proven herself a pretty appealing representative of the MS community. So the rest of us poster-person-wannabes can relax. Whew!
Let's Talk About Me
Confession: I don't really have much patience for crossword puzzles, and almost none at all for watching other people fill them in.
Even though my disease and my job dictate that I keep abreast of MS research, I try to keep my distance -- quite a task for someone who gets clammy just looking at MS-ride brochures. The hardest times come in April, when I start putting together these anniversary-of-my-diagnosis stories and I find myself thinking and talking about MS for hours every day. Once in a while I succumb to a poor-me moment; more often it's a holy-[bad word], I've-got-MS! moment. Both are unsettling; both pass quickly enough.
Not that I keep track of such things, but I figure I've stuck more than 700 Copaxone-filled syringes into my skin over the past two years. Sometimes it leaves a hard, itchy lump at the injection site. I'll find myself idly rubbing these lumps while talking with friends (you would, too -- they hurt), and then I start asking myself, "Wait -- have I told this person about my MS? I can't remember!"
It's not like my having MS is any big secret, but it's also not something you want to impose on people unless they need to know about it. It scares people to talk about it -- you can see it in their eyes. And who needs a friend who's blabbing about her chronic, disabling, degenerative disease all the time, anyway?
So mostly I try to forget I have it, which, brochures aside, is usually easy for me, as my symptoms remain blessedly minimal. My fingertips still get numb once in a while, and sometimes my legs feel so weak and heavy (well, they are heavy, but that's another story) it's hard to believe they can carry me where I need to go. So far, though, they've never let me down. I exercise for about 45 minutes every day, and I've not yet had trouble keeping up with my kids, now 9 and 6.
MS hardly ever comes up around my house, except when it's time to write the co-pay check for my three-month supply of Copaxone. (The drug costs $800 to $1,500 per month for those who don't have insurance coverage.) Last month my 9-year-old daughter asked me to remind her why it was that I took those shots every day. When I said, well, remember when we talked about the disease mom has? You know, MS?, she gave me a big wrinkly-nosed "Hunh?" And here I'd been concerned that I'd saddled her with some huge burden that she carried in silence all these months . . .
Anyway. I'm 42. I've got these willful, wiry gray hairs springing up all over my head. I'd like to write a book, but I can't seem to make the time or choose a topic. I need to lose weight before my high school reunion in August. But summer's coming, and that means lots of pool and bike time with my kids and margaritas with my husband. We're going back to Ocean City again, to play in the same sand I played in when I was a kid. So I've got MS. Life is still pretty damned good.
Jennifer Huget is a regular contributor to the Health section and author
of the biweekly KidLife column.
© 2003 The Washington Post Company