Living with multiple sclerosis means living with uncertainty. The course of the disease is very difficult for doctors to predict. Some people live with MS for years without suffering serious symptoms. Others may rapidly become disabled. Why the course of the disease varies so widely remains unclear. One thing is certain. Most people with MS experience periodic relapses, also called flare-ups or attacks. These can be mild or severe. They may show up in many different ways. Symptoms can include:
Soon after being diagnosed in January 2002, her physical status plummeted
quickly. The former fitness buff who regularly skied and jogged describes the
overwhelming MS-induced fatigue that plagued her almost daily. "Sometimes
my eyes hurt too much to watch TV," Levy tells WebMD.
During that period, she traded her running shoes for a cane, broke off a
relationship with someone she had once considered marrying, and relinquished a
long-sought full-time position as director of a new charter school, taking up
part-time work instead.
Then, just as quickly as the symptoms struck, they abated. "I had tried
all the drugs on the market for MS. As a last resort, I even did
chemotherapy." She found relief through an experimental drug (not yet
approved by the FDA for MS).
Now, for the second time in three years, she's had to evaluate her future.
"I still dream about going for a jog. But now I can walk home from a movie
20 blocks, instead of taking a cab," Levy says. She is back to work full
time, sometimes pulling 12-hour days. And she's re-established a relationship
with her old boyfriend.
Through the ups and downs of the disease, people with MS must go on with
their lives. Very often, that means making long-range decisions about how to
live, from employment to recreation -- and being open to re-evaluating them as
needed. In addition to these "big picture" decisions, practicing
seemingly small lifestyle strategies can make the disease more manageable.
Working With MS
Like many others with MS, Levy was forced to make decisions about her
professional life. Among the questions she faced: Do I tell my employer and, if
so, when? Can I continue working? What accommodations will I need?
New laws, ever-increasing resources, and improved attitudes are making these
decisions easier. Currently, 43% of adults who have had MS for 12 years retain
employment, according to an ongoing nationwide study sponsored by the National
Multiple Sclerosis Society (NMSS).