ParfumGigi@aol.com
ParfumGigi@aol.com20 août, 2005 22:28
The MS challenge
By Carey Hamilton
The Salt Lake Tribune
Salt Lake Tribune
Leaning against her Harley Davidson Sportster, Mary O'Driscoll appears youthful and healthy in a photograph, with waist-length golden locks, a smiling face and a thin physique clad in leather chaps.
Sixteen years later, the woman who once crisscrossed the country on her motorcycle with the license plate WLD1 is in a wheelchair, her left arm and legs limp and unusable.
The 45-year-old Salt Lake City woman began noticing symptoms of multiple sclerosis in the early 1990s but wasn't diagnosed until 1998. Like thousands of others, MS struck O'Driscoll in the prime of her life. Once her doctor declared she had the incurable central nervous system disease and she started taking medications, she took a turn for the worse and has been in a wheelchair since 1999.
ú "I think the medicines that were supposed to help me speeded the MS up," O'Driscoll said. "And they are so expensive I couldn't afford them. I've tried everything except bee stings."
About 400,000 Americans have MS, with 200 people diagnosed with it every week. Symptoms may be mild, such as numbness in the limbs, or severe, with paralysis or loss of vision. The disease is hard to diagnose because patients experience different symptoms and severities.
In the past, MS sufferers had little in the way of medication or treatment. Since the early 1990s, researchers have made headway and the number of drugs for MS has steadily increased, although they remain expensive and have side effects, such as nausea and fatigue.
The most widely available drugs today are known as the "ABC" treatments - with "A" standing for Avonex, "B" for Betaseron/Betaferon and "C" standing for Copaxone. The drugs work by regulating aspects of the immune system, and cost about $10,000 to $15,000 a year.
The ABC drugs tend to preserve patients' myelin, which protects the nerve fibers of the brain and spinal cord, until newer treatments become available.
However, not everyone agrees on the best course of treatment.
In 2004, after studying the long-term progress of people with MS, doctors at the Mayo Clinic recommended newly diagnosed patients wait to see how their disease progresses before taking the drugs. About 17 percent of patients have a "benign" form, and while they can have periodic attacks, they see no or minimal disability accruing over time, the researchers said.
"This study raises questions about the current dogma out there that all patients should be started on medications as soon as possible," researcher and neurologist Moses Rodriguez said when the study was released in August.
By not treating those who do not need the drugs, "we can save society hundreds of millions of dollars, and the patients with benign MS can avoid major side effects," he said.
Still, the The National Multiple Sclerosis Society encourages patients to begin drug therapies immediately.
"We still have the same position that people diagnosed with MS should not take a wait-and-see approach because all the current therapies that are available are basically an insurance policy against future damage," said Arney Rosenblat, public affairs director for the society.
"They will not reverse damage. But as new breakthroughs occur, those that have the highest level of wellness will benefit from them," she said. "It's important to save the function you do have."
John Foley, division chief of neurology at LDS Hospital and a professor at the University of Utah School of Medicine, believes patients should take advantage of the available medications. He is optimistic about a new drug recently approved by the Food and Drug Administration, Tysabri, which is showing promise in reducing relapse rates.
"Tysabri has the potential to shut down attacks," said Foley, who treats about 1,200 MS patients from the Intermountain West. "We're excited to have a new drug."
Given intravenously every four weeks, Tysabri has minimal side effects, including a slight risk of headaches, allergic reactions, depression, joint pain and hives, Foley said. Patients who took Tysabri in clinical trials experienced a 66 percent reduction in relapses.
The drug prevents immune cells from crossing the blood-brain barrier into the brain, where they can cause inflammation and damage nerve fibers and myelin.
Researchers say patients taking the drug also had fewer lesions on their brains - one of the hallmarks of MS. Lesions damage the brain and spinal cord, and are detected via magnetic resonance imaging or spinal taps.
Tysabri is expensive - $2,500 per infusion - and some insurance companies are still deciding whether to pay for it.
Sue Higgs is happy her insurer is footing the bill. She received her second treatment in early January and is feeling stronger already.
"I am amazed how much energy I've had, even with my broken ankle," Higgs said.
Diagnosed in 1997 when she was 40, the Bountiful mother of five began a downward descent in 2003, constantly feeling fatigued and accumulating more lesions. Tysabri came just in time for her, she said.
Jay Gurmankin, a Salt Lake City lawyer, also has high hopes for the new drug. He has lived with MS for 33 years and now uses a scooter, a cane or a walker to get around.
One of the hardest aspects of MS for him was accepting that he couldn't sail, ski, run and live his previously active lifestyle.
"I'm almost 60, and I don't know how much this [Tysabri] will give me, but it will help the younger generation," he said. "My hope is it arrests the process of the disease and relieves the inflammation."
As chairman of the Utah chapter of the National MS Society, Gurmankin meets many people with the disease and can influence policies. He wants to create a support program for children whose parents have MS and wants to increase the amount of money for research.
About 40 percent of the money the chapter raises from events throughout the year, such as the MS Walk in spring and the 150-mile bike ride in northern Utah, goes to the national society for research.
Explaining MS
People with multiple sclerosis experience a breakdown in their myelin, the fatty substance that surrounds and protects nerve fibers of the brain and spinal cord - similar to rubber insulation that protects electrical wires. When the myelin sheathing is destroyed, nerve impulses to and from the brain are distorted and interrupted. MS can hit anyone, although it affects women more than men and more often people from colder climates north and south of the equator. The high-risk zones include Northern Europe, the northern United States, southern Canada, New Zealand and Australia. Utah is in a temperate latitude north of the equator and has many residents of Northern European heritage. That combination of environmental and genetic factors is a possible explanation of Utah's high population of people with MS - estimated at 10,000.
