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agate
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 Posted: Tue Oct 31, 2006 9:13 pm Post subject: (Article) "MS no longer a death knell" |
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From the Virginian Pilot, October 29, 2006:
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Multiple sclerosis no longer a death knell for sufferers
By NANCY YOUNG, The Virginian-Pilot
October 29, 2006
"The crippler of young adults."
Those words rang in Rick Powell's head after he was diagnosed with multiple sclerosis in 1980 at the age of 26. He figured he was doomed to a short life in a wheel chair.
That was all he had heard about the disease that can cause severe nerve damage. It was all anybody seemed to know - or would know until recent years, when breakthrough treatments started to become available.
"Gathering information about what MS was, at that time, was somewhat difficult," said Powell, 53. "When I was first diagnosed I was completely frightened. 'The crippler of young adults ' scared me completely."
Things have changed.
"The outlook is certainly much more hopeful" now, said Dr. Thomas Pellegrino, chairman of the neurology department at Eastern Virginia Medical School in Norfolk. "Twenty years ago, I would have told them, 'There's nothing I can do.' "
But while the medicine that deals with MS has made leaps and bounds - if still short of a cure - the public perception of the disease is often still stuck in the wheelchair Powell feared.
"They don't know about MS now," said Sharon Grossman, president and chief professional officer of the Hampton Roads chapter of the National Multiple Sclerosis Society, which serves about 2,600 clients in the region.
A couple of decades ago, it might take years just to get a good diagnosis. Even with a diagnosis, until the late 1990s, there wasn't much more that doctors could say other than " 'You have MS. Now go home and live with it,' " Grossman said.
Multiple sclerosis - which affects about 400,000 Americans, the majority of them women - continues to be something of a mystery. No one knows for sure what causes it. There's no way to predict if patients will go years or days without flare-ups - or what kind of lasting damage, if any, they'll sustain.
The effects - including vision problems, depression, profound fatigue and paralysis - are all over the map and vary greatly from person to person and even from day to day.
With multiple sclerosis, the body's immune system seems to attack the coating of nerves, called myelin, as though it were a foreign object. The result is much like when an electrical cord is stripped of its insulating sheath: It may work unpredictably or completely short out.
When that happens in the brain, it messes with the signals it sends. The brain may send a command to take a step, but the neural impulses may be garbled or nonexistent, so the feet don't get the message.
"Sometimes I stand up and the legs work, sometimes they don't," said Powell, an information technology manager in Virginia Beach.
Although most people with the disease now have the same life expectancy as people without it, over time, all the flare-ups can cause an accumulation of nerve damage. Drugs developed in the past decade, though, seem to prevent some attacks and reduce the severity of those that do occur, said Pellegrino.
"It's possible to say to patients now, we do have treatments available that can modify the course of the disease," he said.
When she was diagnosed two years ago, that was what Diana Nixon, an emergency room nurse in Hampton, heard from her doctors. She said she feels lucky she was diagnosed at a time when treatments were available and is confident a cure is on the way.
"I'm really excited. I just know they're going to find something," Nixon said. "But I'm not going to put my life on hold until they find a cure."
Nixon, 44, gives herself injections three times a week and has not had major symptoms since the attack - which involved vertigo, vision problems and difficulty walking - that led to her diagnosis.
There were signs of trouble well before Nixon's diagnosis. In 1999, she said she started noticing "little things. Tingling in my arms. I thought it was carpal tunnel." She ascribed problems with her vision leading up to her first major attack to having "old eyes."
That's typical, said Grossman. People tend to not go to the doctor until symptoms become dramatic or disabling, but the development of drugs that can slow MS means "early diagnosis can really make a difference in the disease."
It wasn't until she was diagnosed about two years ago at age 50 that Martha Rogers realized that she had probably had it for years. Sometimes one foot would drag or catch on the ground, or she was unaccountably tired. What finally got her to the doctor was a problem with her vision.
It was like "somebody pulled a gray shade over my eye. It was really weird," said Rogers, of Norfolk.
She was diagnosed and soon went on the latest drug available at the time, Tysabri. Some called Tysabri a miracle drug for MS, but shortly after it became widely available, it was learned that a couple of people during the clinical trials had died of a rare brain infection, and it was pulled from the market.
Rogers, who occasionally does paid speaking engagements for the company that makes Tysabri, and others successfully lobbied to have the drug reapproved by the federal Food and Drug Administration, this time with much stricter monitoring.
Rogers started Tysabri again this month. She said she understands the risks.
"Look at the cost if I didn't do it," said Rogers, who also manages her MS with yoga and regular walks. "If I couldn't drive, if I couldn't walk."
Tysabri represents the latest in multiple sclerosis treatments available to patients, but more are in the pipeline.
"The holy grail is a drug that would reverse clinical deficits that have already accumulated," Pellegrino said. That, along with an actual cure for MS, is still a long way off, but there's increasing optimism that researchers around the world are getting closer, he said.
That's what Powell needs. The newest drugs were developed too late to stall much of the damage multiple sclerosis has done. He walks with a limp and often wakes up with crushing fatigue.
More than 26 years after his diagnosis, though, Powell is still not in the wheelchair he feared - two-thirds of people with MS are able to walk, according to the society. Powell works full-time for Tesoro Corp. in Virginia Beach, where he's grateful to have an employer "who sees me for what I can do and not for my limitations."
Powell noted that many people who have multiple sclerosis are not so lucky, fearing - often with good reason - that they'll lose their jobs if they disclose that they have the illness.
The unpredictability of the disease and its symptoms make it impossible to know how or even if it will affect someone's ability to do a job, said Pellegrino.
And even when it does, there are often ways to accommodate it. Powell said his employer offers him flexible time. Sometimes he works at home in the middle of the night because those might be his best hours.
Powell said he went a dozen years after his first attack in 1980 with no major problems. Up until a few years ago, he was still cycling long-distance and canoe racing, two of his loves. And every now and then there's still a "lucky opportunity" to maybe bike a little or get out on a boat.
"There's something nice about being out on a quiet river in the middle of nowhere," he said.
Reach Nancy Young at (757)446-2947 or nancy.young@pilotonline.com.
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