Thu, Mar. 20, 2003
BY CONNIE PRATER
Marty Nowell represents the future for some 400,000 Americans suffering from multiple sclerosis, the debilitating neurological disease that typically strikes young adults in the prime of their lives.
Nowell was diagnosed with the disease in 1994. She was 41.
A year later, 'My husband asked me to marry him and I said, `I can't. I've got MS. I could be in a wheelchair tomorrow,' " recalled Nowell, now 51, of Key Largo. 'He was very supportive. He said, `I'll push you down the aisle.' "
Nowell was one of the first MS patients around the country who received doses of an experimental drug in 1997 that stopped her episodes of blurred vision, severe muscle fatigue and poor coordination often associated with MS.
"I still have MS," Nowell said. "It's just not progressing. It's kind of at a sleeping stage. I feel that I've been given a second chance at life."
She and many others. In addition to clinical trials of drugs such as Antegren, the drug given to Nowell, scientists across the country are researching a vaccine treatment, possible hormone injections, genetic testing and regenerating the membranes in the brain that are damaged during MS attacks.
Those with MS suffer from periodic episodes -- called exacerbations -- where their bodies' immune system attacks the membranes in the brain and nervous system, called myelin. When myelin is destroyed, it interrupts the normal signals sent throughout the body and can cause muscle, bladder or speech impairment; partial blindness; or numbness in the limbs.
Doctors, who suspect a genetic link to the disease, say patients can lead normal lives and then suddenly between the ages of 20 and 40 (some younger) begin to have symptoms. Some actually have symptoms years before they are diagnosed.
ROLE OF GENDER
Women are twice as likely as men to have the disease. One of the National Multiple Sclerosis Society research projects will look at how gender differences play a role in the disease. Although men are less likely to get MS, those who do contract it progress more rapidly than women, doctors say.
"There is clearly a hormonal influence in MS," said Dr. Howard Zwibel, a neurologist and medical director at the Health South Doctor's Hospital Comprehensive Multiple Sclerosis Center in Coral Gables.
Zwibel said studies have shown that women with MS who become pregnant -- when hormone levels in their bodies are highest -- are less likely to experience symptoms. Another study showed the female hormone estrogen may be beneficial in reducing attacks.
"We also know that males who have the disease and have it in a bit more progressive manner have a bit less testosterone," Zwibel said.
Zella Pirello said she was relieved when she finally found out what was causing her symptoms, which began nearly five years before she was diagnosed in 1992.
Years ago the disease was difficult to diagnose. Because the episodes of blindness or numbness could sometimes last a fleeting 48 hours or more, by the time many patients got in to see a doctor there were no signs that anything was wrong.
Many people were told it was all in their heads and to seek psychological help. It wasn't until advancement in MRI scanning technology in the late 1980s that doctors were able to see lesions on the brains of MS patients indicating destruction of myelin.
Pirello, 54, of Biscayne Park, said she joined a support group of men and women to help her cope.
"A lot of the women who I knew had been encouraged to seek mental health treatment because no one believed them. I was one of them," said Pirello. "I think the medical profession is listening to us much better only because they can verify what we're saying."
Indeed, the National Multiple Sclerosis Society, the national research organization, is funding more than 300 study projects. In addition, the group has set aside $20 million for four key initiatives: studies of genetics, gender, brain lesions and how different groups progress with the disease over time.
"It's actually a very exciting time for our patients both with medications and treatments that are seemingly altering the course of their disease," said Zwibel.
Nowell -- who was part of the Antegren trial -- was treated by Dr. William Sheremata, a professor at the University of Miami School of Medicine who co-authored one of the Antegren trials conducted in 1999 and 2000.
"We had really good evidence that there is a long-lasting benefit from doses of this stuff," Sheremata said.
Additional trials on the drug are underway in the United States, Canada and Europe. Sheremata and others are hopeful it will get final approval from the U.S. Food and Drug Administration.
Michael Myette, 51, was diagnosed with MS in August 1992, although he started having symptoms in his 20s. Today, he uses a walker and electric cart.
He and his wife, Patti, of Coral Springs lead a monthly support group for MS patients and their spouses at the North Broward Medical Center in Pompano Beach.
Myette, who was fired as a property manager in 1993 because he couldn't keep up with the demands of the job and his illness, now receives Social Security disability benefits. He and his wife struggle to make ends meet each month and rely on assistance from a pharmaceutical company for his medication.
Myette says he'll be at the finish line of the March 30 MS Walk waiting to hug those who took the time to care about his disease.
He said: "The least I can do is go out there and cheer them on."
© Copyright 2003, Miami Herald