Working in the Shadow of MS : * Health: Multiple sclerosis sufferers, including those in O.C., find that holding a job--and getting insurance--can be a nerve-racking experience.

When her symptoms of multiple sclerosis first appeared, Marie’s employer encouraged her to visit the MS society. A borrowed scooter helped her keep her job--entering computer data.

But when her condition worsened, causing errors in typing and lapses in memory, she was moved to the reception desk. Later, her eight-hour workday was cut in half.

Though each demotion was proposed by her boss, Marie was asked to request each one in writing.

“They were being careful--looking out for their own side, too,” Marie said.

Eventually, Marie, who was supporting a teen-age daughter, could no longer afford Orange County. This summer, she quit her job and moved in with her parents in Oregon.

There are 500,000 MS sufferers in the nation--about 2,500 in Orange County alone. But while only 10% to 15% ever suffer such severe symptoms, MS’s unpredictable nature makes holding a job a nerve-racking experience.

About 75% of all MS sufferers work for a living, but they know that the skills they have this week could begin ebbing next week--and could eventually be lost for good. Legs that tire more readily, fingers that seem a little less nimble, can set off an agony of uncertainty for the MS sufferer.

Part of the problem is the nature of the disease, with its intimidating name and wildly varying symptoms.

MS causes the antibodies in a person’s autoimmune system to attack not only intruding viruses and bacteria but also the sheath that surrounds nerve fibers. The myelin sheath, as it’s called, is destroyed and replaced by scar tissue, which interferes with the flow of nerve impulses.

The results can be relatively minor, such as feelings of numbness, prickling or ants crawling over the skin. About 20% of MS sufferers have one episode that ends and never returns.

But the symptoms also can be very disturbing: a sense of weakness, loss of balance, slurred speech, double vision or uncontrolled eye movement. At its worst, MS can cause loss of bladder or bowel control and partial or complete paralysis.

Only relatively recently has technology allowed MS to be confidently diagnosed, but at present, only time tells whether a person’s MS will go to extremes.

The uncertainty also affects employers, who cannot know whether a worker with MS is on the road to disability. Though employers may be sympathetic, many view those with MS as a potentially unproductive worker who could raise the company’s already immense health insurance premiums.

Not surprisingly, this has led to insecurity among MS sufferers who have jobs or are looking for work. Favorite topics at meetings offered by the National Multiple Sclerosis Society in Irvine are how much information to divulge to prospective employers and how risky it is trying to change jobs.

“There are limitations on what an employer can ask you,” said Newport Beach attorney James W. Han, an occasional speaker at such meetings. Law forbids asking job applicants about the nature or severity of their handicaps unless it relates directly to their job performance, Han said.

Thus, “Do you have a physical disability?” is an improper question, he said. The valid question is: “Do you have a physical disability that will hinder your performance of the central function of your job?” Only when an applicant answers “yes” may the employer ask follow-up questions.

Han’s advice to MS sufferers is to “think like a lawyer” and consider employers’ questions to be in present tense. “ ‘ Is it preventing you from performing your job?’ You may answer in all honesty, ‘No, it is not.’ You have a physical disability, but it doesn’t impinge on performing the job.”

Laying off a person with MS because “the employer was concerned about (the worker’s) well-being” won’t hold up in court, Han said. The “in good faith” argument--that the employer was trying to protect the worker from his or her own handicap--is no defense; it often really means “protecting (the worker) from the company’s own perceptions of MS,” he said.

Sometimes employers will hire an MS sufferer but will deny full health insurance coverage, Han said. Their insurance carriers consider MS a disease that can run up huge medical bills and refuse to insure when it’s a pre-existing condition, Han said.

Insurance companies, in effect, consider MS sufferers uninsurable, said Dr. Stanley van den Noort, professor and chairman of the neurology department at UC Irvine’s College of Medicine. “It’s a huge problem,” he said.

Michael Chee, a spokesman for Blue Cross of California, the state’s largest health insurer, said that even when MS is pre-existing, “it does not necessarily preclude coverage.”

“You apply and go through the same steps as anybody else, but it does subject you to a closer medical review,” Chee said. “You could have a mild case of MS, and we may be able to underwrite you and put a waiver on your condition.”

That means you get health insurance, but your MS remains uninsured from six months to more than a year while the insurer waits to see whether the disease worsens.

“It’s not done very often,” Chee said. “People who apply for such coverage have a very low chance of getting it. Again, it depends on the severity of the condition.”

MS sufferers are the sort for whom the state’s new catastrophic health insurance program was introduced last January. It has turned out to be so popular that all 10,000 program openings were filled by July.

Funded by the increased state tobacco tax, the program is administered by Blue Cross of California. Only those not eligible for any other kind of health insurance, including Medicare, are eligible for the state program, Chee said. “It’s a last resort kind of thing.”

Three insurance companies offer insurance under the program--Blue Cross, Blue Shield and Pacific Mutual. Blue Cross charges a middle-aged MS sufferer in Orange County $184 a month for coverage of $50,000 a year, $500,000 per lifetime, with a $500-per-year deductible.

Van den Noort says such insurance “takes forever and costs a lot. It’s very inadequate.” Hospitalization for MS can cost $1,000 a day, he said.

Chee concedes that “these benefits can run out very fast. But the bottom line is, it’s better than nothing.”

Because of the insurance situation, Van den Noort recommends that people with MS not leave their current employment if they can avoid it. Maintaining current health insurance is “absolutely vital,” he says. You lose it if you quit, and the next employer’s insurance carrier may not be willing to take over.

Researchers at UCI’s College of Medicine are trying to devise a test that could reveal how active a sufferer’s MS is. Van den Noort says such a test would greatly help in treating the disease. Chee said such a test, if proved reliable, might allow insurers to be less wary of insuring MS sufferers.

But such a test is many years in the future.

“It’s exploratory at this point,” Van den Noort said. “Good research takes a long time.”

At the same time, private and academic researchers--including some from USC and UCI--are trying to devise an MS vaccine that would prevent or control the disease. And others are at the earliest stages of trying to regenerate tissue destroyed by MS.

“We’re moving,” said Van den Noort, “but we’re not close to success yet.”