MS patients have long wait for specialist

If you have multiple sclerosis and live in South Carolina, you can expect to wait six to nine months to see a specialist.

Meanwhile, the degenerative nerve disease could numb your legs, blur your memory and send blinding pain up your spine.

Legislators hope to improve health-care access with a joint resolution forming a statewide multiple sclerosis study committee. The resolution passed the state Senate on Friday and moved on to the House for consideration.

About 40 percent of people with the neurological disease seek treatment outside the state, the National Multiple Sclerosis Society Mid-Altantic Chapter said. Many look to centers in Charlotte or Augusta, while a few travel as far as New York.

Summerville resident Elizabeth Peterson travels two and a half hours to Augusta for treatment. The Latin teacher was diagnosed in 1995 after noticing a tingling in her legs.

Her immune system turned on her body, attacking the protective tissue that envelops nerves in her brain and spine. The resulting scar tissue and nerve damage block the electrical impulses that drive movement.

Multiple sclerosis affects people in diverse ways. Peterson has been in a wheelchair for two years, and her right hand is contracted into a fist, a source of pain.

"It's all about quality of life," Peterson said. "What can you do to keep active as long as you can?" Most people with multiple sclerosis have a normal life expectancy.

Sen. Randy Scott, R-Summerville, who sponsored the resolution with Sen. Joel Lourie, D-Columbia, met Peterson after she invited him to a Summerville multiple sclerosis support group meeting.

"I've known about MS. I've known people with MS. But I did not know you need a neurology specialist," Scott said. "I just thought it was unacceptable that victims of MS would have to travel."

About 3,800 South Carolinians are estimated to have the disease, the society said.

Meanwhile, South Carolina has one multiple sclerosis specialist, who can devote only four hours a week to patients outside Ralph H. Johnson Veterans Administration Medical Center.

Dr. William Tyor, who is chief of neurology at the VA hospital and a professor of neuroscience at Medical University of South Carolina, often hears that the state has no multiple sclerosis center.

MUSC has a center, he said, but it is woefully understaffed. The center has gone from having three specialists to having one for a half-day per week.

The majority of his time is spent at the VA hospital, where Tyor treats about 100 patients. At MUSC, his non-VA patient roster totals nearly 300 patients.

"I don't think we do a good job, outside the VA, in the state providing good, consistent care," Tyor said.

Hiring more multiple sclerosis specialists is a priority, he said, but competition is fierce nationally for the handful of experts entering the job market each year.

Tyor, who supports the resolution and helped draft the language with the society, knows the dangers patients face.

"If you don't have insurance coverage, you're in trouble," he said. Medications to slow the disease's progression can cost $15,000 to $25,000 a year.

"You can get sicker. It's really sometimes a nightmare for these patients who fall through the cracks. I see them all the time," he said.

Peterson said she instantly noticed the difference in having a team approach when she visited the Augusta Multiple Sclerosis Center. There, Dr. Mary Hughes has about 3,000 patients, half of whom are from South Carolina.

Physical therapy, occupational therapy and counseling services are all in the same location. "I like the idea that they'll talk together," Peterson said.

All those resources are available at MUSC, Tyor said, but the disease specialists that hold a center together remain beyond reach.

Reach Jill Coley at 937-5719 or jcoley@postandcourier.com.