Working in the Shadow of MS : 3 People MS Hasn’t Stopped

Diane Goldberger has not let multiple sclerosis interfere with her busy life.

She maintains a home in Costa Mesa, is president of the PTA at the school her three children attend and works out of her home as a bookkeeper for her husband, a physician in private practice in Fountain Valley.

But the road to eventual diagnosis of MS was a long one for Goldberger.

Her first episode occurred in 1975 while she was in nursing school. Her neurologist didn’t give great significance to the numbness and tingling almost the full length of her legs. A spinal tap was done, but it proved inconclusive.

No symptoms appeared for nine years. In 1984 she again developed numbness and tingling in the legs, in addition to back pressure. A CAT scan showed nothing. But a babinski reflex test--when the sole of her foot was tickled, her big toe turned upward instead of downward--indicated there was a problem with the central nervous system.

Despite testing over the next four years, there were no conclusive results. When symptoms reappeared 13 months later, a Magnetic Resonance Imaging test was done. It came out negative.

At that point, the neurologist sat her down in his office, told her she didn’t have MS and recommended psychoanalysis. “He felt that I was having a hysterical illness,” she said.

When she was hit with optic neuritis, she went to a different neurologist. Goldberger’s depth perception was now suffering, and she was experiencing severe fatigue.

Finally, in 1988, a more complete MRI was done and the diagnosis of multiple sclerosis was officially made.

Although her husband’s office has health insurance covered by Humana, her neurologist is outside the Humana hospital system, so she won’t be reimbursed. Attempts to change insurance carriers have been rebuffed now that Goldberger is marked by a preexisting condition.

“It’s only been three years since I’ve actually been diagnosed,” the 38-year-old Goldberger said, and she realizes she hasn’t yet accepted the fact that she is handicapped. Her sole concession has been to use an Amigo scooter to get around. “I have to learn that I can only do so much,” she said.

But there is a single, valuable consolation for the Goldbergers: There’s a doctor in the house.

John LeBel’s first symptoms of multiple sclerosis occurred when he fell down a flight of stairs at home in April, 1985. He had broken no bones, but when he awoke the next morning, he noticed that both his feet were numb. His bare feet felt as if they still had socks on.

Over time the numbness migrated north, reaching his waist, chest and hands. He went through a series of tests, but no diagnosis was reached.

Yet, when he tried to get his recreational pilots license renewed, the FAA regional flight surgeon denied it. “They grounded me because they didn’t know what it was,” said LeBel, an engineering software manager.

What was most frustrating to LeBel was the lack of a diagnosis.

But soon he developed a weakness in his right foot: He could walk on tiptoe, but when he walked on his heels, his toes would drag on the floor. The symptom was familiar to neurologists and an MRI resulted in the MS diagnosis.

LeBel was referred to the National Multiple Sclerosis Society branch in Irvine. Among the variety of support groups offered there--Looking So Good for the newly diagnosed, Spouse and Significant Others--the most convenient time for him was the men’s support group.

“They were a really great bunch of guys, very helpful, very decent, very upfront--sometimes painfully so,” he said. But most of these men were no longer working, and most weren’t ambulatory and had to get around with walkers or scooters. “This was a very skewed picture of what my prospects with MS were going to be,” he said.

Almost all the support groups offered by the MS Society were held in the middle of the day, so LeBel created another option: a “working person’s group” for those who work during the day.

When symptoms of multiple sclerosis first appeared some 10 years ago, Carol Henderson was hospitalized for two weeks and prescribed a healthy dose of the drug prednisone.

After her release she felt strong enough for a week’s skiing in Aspen. Since then, despite the numbness in her left leg and a perceptible limp, she has led an active life, keeping limber with yoga or walks with friends in her Seal Beach neighborhood.

She works as an executive secretary at a medical facility because of the “fabulous benefits offered, long-term disability” and that she felt comfortable telling the examining physician about her multiple sclerosis.

Her only worry is that numbness on her left affects her hand and has slowed down her typing speed. If she can pass a typing test at 60 or 65 words per minute, as she did to get her job, she’s doing quite well, she said.

Her department, however, is about to be phased out, and she will be applying for other jobs in the organization. Henderson, 48, is concerned about whether she can be retrained to perform other tasks and is thinking of enrolling in Cypress College to gain a medical staff coordinator certificate.

“Maybe (the illness) is just a challenge being thrown your way,” she said, “just magnifying the fact that I need to get back to school and gain some skills so I can get off (the track of) having to take those typing tests.

“That’s my goal.”