ONE morning four years ago, Phyllis Motta woke up to discover that her feet were completely numb.
“I asked my sister to step on my feet and I couldn’t feel them,” the 28-year-old Brooklyn resident recalled. “I thought it was funny.”
Her amusement turned to fright a week later, when she started walking into walls.
Two spinal taps and several MRIs later, her doctors gave Motta the devastating diagnosis: She had multiple sclerosis – a chronic, often disabling disease of the central nervous system.
“My whole world fell apart,” Motta said. “People have dreams and plans . . . You don’t ever factor in getting an incurable disease at age 24.”
About 350,000 Americans have MS, which typically attacks young adults between the ages of 20 and 40 and can cause unpredictable symptoms that range from mild limb numbness to paralysis or loss of vision.
Plus-size model Emme’s father died of MS-related complications. Montel Williams has publicly announced his battle with MS. And TV newswoman Meredith Vieira’s husband, Richard Cohen, has struggled with the disease for more than 25 years.
When Vieira married Cohen in 1986, the symptoms were barely perceptible. But in recent years, his vision has deteriorated to the point where he cannot drive, and he now walks with a cane.
“Richard doesn’t pity himself, so it’s not fair for me to,” Vieira told Ladies’ Home Journal last October.
“But you go through periods when you’re angry and you think, ‘Why does this have to be?’
“Sometimes, I just feel sorry for myself . . . I live day to day. Right now, things are good. [But] on bad days, you start to obsess about things. I rely on Richard a lot, and I can’t imagine him not being there or being in a situation where I’m doing everything,” said Vieira, a regular on ABC’s “The View.”
Supermodel Emme was so affected by her father’s death that she offered to become a spokeswoman for the National Multiple Sclerosis Society.
“For years, I didn’t have contact with my father because he did not want me to see him disabled, in a wheelchair,” Emme said.
“My parents divorced when I was a year old, and my father was diagnosed with MS when I was 12. Back then, they had no medication to treat it, so his condition quickly deteriorated.”
For years, Emme had only phone contact with her father. Finally, at the age of 30, she arranged a visit.
“I told him, ‘Daddy, I don’t care what you look like. You’re my father and I love you,'” she remembered.
Two weeks before they were to meet, he hit his head on a marble night stand, and soon after, suffered a fatal heart attack.
“His motor coordination by then was so bad, he couldn’t move without assistance,” Emme said. “Although MS didn’t directly kill him, in his case, its complications were fatal.”
SINCE Emme’s father’s death in 1993, researchers have made huge strides in the treatment of MS.
Three injectible drugs – Avonex, Betaserone and Copaxone – help reduce the frequency and severity of MS attacks.
New research published last September in the New England Journal of Medicine suggests that aggressively treating early-stage patients with these drugs can delay the progress of the disease and mute its damage.
Another drug, Novantrone, helps prevent the disease from worsening.
But scientists are still baffled by MS, which attacks twice as many women as men. They are still unsure what causes it, and although researchers are studying new drugs to treat symptoms, there are still no clear cures on the horizon.
“For all our advances, many aspects of multiple sclerosis remain a mystery,” said Dr. Brian Apatoff, director of the Multiple Sclerosis Center at the Weill Cornell Medical Center.
MS is believed to be an autoimmune disease similar to lupus or rheumatoid arthritis, in which the immune system mistakenly attacks the body’s own tissues.
Symptoms are caused by the destruction of the myelin sheath that covers nerve fibers-akin to the breakdown of the insulation of a telephone wire.
An individual who has a parent or sibling with MS has a 3 percent chance of developing the disease, about 20 times that of the general population.
New York doctors are studying different combinations of the three chief MS drugs to see if they are any more effective when used together.
Doctors are also studying stem-cell therapy, in which fetal cells from the nervous system are implanted in an MS patient’s brain to restore function.
There’s also a theory is that MS is triggered by a virus.
“Some clinical trials are actually studying the use of antibiotics and anti-viral drugs to treat the disease,” said Stephen Reingold, vice president for research programs at the National Multiple Sclerosis Society.
California researchers are also studying the use of pregnancy-level hormones in women suffering from MS.
“Women often improve during pregnancy because their immune system downgrades, decreasing risk of attack,” explained Dr. Fred Lublin, director of the Corinne Goldsmith Dickinson Center for Multiple Sclerosis at the Mount Sinai Medical Center.
WHILE a cure is still elusive, doctors say they are optimistic MS will eventually become a manageable illness.
“Very few diseases actually have a cure,” Apatoff said. “Like diabetes and hypertension, we may never be able to solve the symptoms of MS, but be able to control symptoms enough that people can lead full lives.”
A month after her diagnosis, Motta had a frightening second attack that left her numb from the chest down for a month. But since she started taking Avonex in 1996, she has been able to lead a normal life.
“I’ve only had a couple attacks in the last four years, all of them stress-related,” she said.
“The most recent one was last August, when my sister got married. I was supposed to be the maid of honor, but I backed out – I didn’t want to walk down the aisle bumping into things.”
Gina Gunkel was diagnosed with MS in 1991 but hasn’t had any attacks since she went on Avonex four years ago.
“I finally feel like I have control over my life,” said 33-year-old Gunkel, who is four-months pregnant.
“Ten years ago, I never would have thought I would be able to work and have a child. But over the last decade, researchers have come so far . . . I think the next decade will bring huge advances, as well.”