Fighting an eleusive disease

It is a disease that plays hide and seek, striking and sometimes disabling, then disappearing, only to return again later. Its symptoms can be pronounced and obvious or somewhat silent, noticeable only to the afflicted or those closest to them. It is an autoimmune disease that attacks the central nervous system. It is incurable. It is multiple sclerosis and thousands of people in the United States, mostly women, are affected by it.

"I have what they consider an 'invisible handicap,'" said Valley resident Pat Grohall, former coordinator of a local MS support group. Grohall has had MS for about 30 years, she said, although due to the disease's elusiveness and a lack of modern medical technology, she wasn't immediately diagnosed.

Multiple sclerosis occurs when the body mistakenly attacks the substance myelin that surrounds nerve fibers in the central nervous system, consisting of the brain, spinal cord and optic nerves, according to the National MS Society. Myelin not only protects nerve fibers, but also makes their job possible. The attacks on the myelin sometimes leave scar tissue -- multiple sclerosis literally means "many scars." When myelin or the nerve fiber is destroyed or damaged, the ability of the nerves to conduct electrical impulses to and from the brain is disrupted, and this produces the various symptoms of MS.

These symptoms can be unpredictable and not only vary from person to person, but one person's symptoms can also vary from time to time -- with no sense of progression as some might expect. The symptoms can go from better, to worse, and oddly, to better again. A person with the disease may suffer from severe symptoms then appear to regain lost functions. "It was weird when I lost my sight," Grohall said describing a time years ago when she went blind -- then regained her sight later. She was preparing to apply her make-up one day when she closed one eye and was shocked to discover she couldn't see anything with the remaining eye open. Her optic nerve had been affected in a way that interrupted vision in the center of her eye, leaving her peripheral vision intact, thus with both eyes open she could still see, she said. Later, her vision returned completely. But it was this rather disturbing episode that confirmed her diagnosis, she said.

"It is so quirky," Grohall said. "Different symptoms can come and go away, and then another symptom shows up." These symptoms might include abnormal fatigue or severe vision problems like the ones Grohall experienced. A person with MS might have difficulty with balance or muscle coordination, while another might have slurred speech, tremors or bladder problems. Other symptoms that are more continual include "painful skin," or "pins and needles" in the hands or feet, Grohall said.

She said the pins and needle effect sometimes leads to numbness, or a burning feeling, "like a hot poker." The numbing can also be dangerous.

"Sometimes I can't tell [my feet are numb]," she said. "Once I sat down in the bathtub and it was scalding -- I didn't know. Now I use my elbow to test the water."

Local insurance agent Cindi Heal also experiences problems with numbness and tingling on a daily basis, she said, but most people wouldn't know she has the disease by looking at her. Heal has the relapsing-remitting type of the disease.

"I take medications, but I'm in just fine shape," Heal said. "Probably no one would know I have it. I have symptoms every day but other people wouldn't know, but I would. I have tingling and numbness that sometimes bother me."

Heal said she plays softball and golf, usually without difficulty, but sometimes the numbness in her hands will prevent her from feeling her keyboard at work.

Heal was diagnosed about five years ago, she said, and she has had four or five "flare-ups," or times when the symptoms were obvious. During those times she experienced a loss of balance and a loss of muscle use -- it meant she couldn't walk. She takes medications for the symptoms and while there is no cure, she hopes that some of these medicines will lengthen the time between flare-ups.

There is no single test available to either identify or rule out MS, according to the MS Society. A battery of tests and procedures are needed to identify it, including a complete and lengthy medical history, a description of symptoms and when they began; testing of nervous system functioning, including reflex, balance, coordination and vision tests; diagnostic tests, such as an MRI brain scan, stimulation tests and a spinal tap. To confirm MS, according to the national society, two basic signs must be met. This includes signs of the disease in different parts of the nervous system and signs of at least two flare-ups.

For Grohall, identifying the disease was a relief that came after years of frustration, inaccurate diagnosis and being told that her difficulties were "in her head."

"I kept asking myself why things weren't working," Grohall said. "As devastated as I was to find out I had MS, there was kind of this 'thank God I'm not crazy' realization."

Grohall tries to approach her illness with a sense of humor -- anything in life can be handled if you have humor, she says. She said with a laugh that people had been right, it was "in her head" -- quite literally.

She said for purposes of identifying the disease, people sometimes need to reach back quite a ways into their medical history, sometimes for seemingly unimportant or unrelated things, before the correct diagnosis is made. "Write down everything," she told one person she spoke with recently, "because some things come and go."

The disease is an unpredictable one and symptoms can vary significantly. The good news is that most people do not become severely disabled by MS, Grohall said.

"There was a woman in her 70s who ran a support group and she used a walker and had it for years and years," Grohall said. "I try to tell people it doesn't mean the end of life -- there's just life with MS." She said there are cases that go fast, but those are the more rare forms of the disease.

Although there is no cure, MS is also not a fatal disease. Specific drugs can help slow the course of the disease and help symptoms in some patients. The National MS Society recommends treatment with one of three drugs, sometimes referred to by patients as the "ABC" drugs -- Avonex, Betaseron and Copaxone - for the most common type of MS, the relapsing form. These drugs are known to help lessen the frequency and severity of MS attacks, to reduce the accumulation of lesions in the brain, and to slow progression of disability, according to the society. For treatment of secondary-progressive MS, a less common type that worsens as it progresses, the FDA has approved a drug called Novantrone. This drug is the first therapy approved in the U.S. for secondary-progressive MS, according to the society, but due to cardiac toxicity the lifetime dose is limited.

Anyone can develop MS, according to the MS Society, but most people are diagnosed between the ages of 20 and 50 years of age, and research has shown that women are three times more likely to have MS than men. While MS is not inherited, studies indicate that genetic factors make some people more susceptible than others. For instance, researchers have found that MS occurs more often in people with northern European ancestry. No one is immune to it, however. Talk-show host Montel Williams was diagnosed with multiple sclerosis three years ago, proving that the disease doesn't just affect Caucasian women.

Approximately 400,000 Americans acknowledge having MS, and every week about 200 people are diagnosed. Worldwide, MS may affect 2.5 million individuals. In the Mat-Su, Grohall estimated from her list of those who previously attended her support group, there are about 75 people with MS. That number, though, only includes those who were diagnosed, acknowledged their illness and attended the meetings. Grohall said there are probably many more out there who are either undiagnosed or choose not to share their diagnosis.

Some people choose not to disclose their illness beyond their immediately family.

"A lot of people don't want anybody to know," Grohall said, pointing out that there can be pros and cons, especially when it comes to employment.

MS usually strikes in the mid years -- the most productive, working years, when people are seen as in their prime, providing for their families and preparing for retirement. "If you're functional and working OK, they might find a way to get rid of you," Grohall said about informing employers of being diagnosed with MS. But, she said, minor adjustments in the workplace often make it possible for someone to continue leading a productive life for a long time after diagnosis.

In a 1998 story authored by Ruth Levine about a research project launched by the University of Washington, Levine quoted an associate professor in rehabilitation medicine, Kurt Johnson, "Based on a 1987 study, 95 percent of people with MS worked at one time, but in five to 17 years after diagnosis, the number dropped to 25 percent. The trend is that people leave their employment prematurely, fearful of how the disease may progress."

The article went on to explain the challenge people with MS may have in being recognized as someone with a disability, who needs special accommodations to continue working.

"Another issue is insurance," Levine wrote. "Patients may fear returning to a vulnerable job position, losing Medicaid or Medicare, and having their disease considered a pre-existing condition."

Chronic pain and fatigue are two of the most common symptoms associated with multiple sclerosis, Grohall said, and simple things like limiting the number of steps a person has to go can make life easier -- both at work and at home. People who are newly diagnosed who live in multi-level houses, apartments or up stairs may want to look at selling their home, modifying it or moving elsewhere right away, before the disease reaches a stage where climbing stairs is too difficult, Grohall suggested, citing cases where MS sufferers had to go into nursing care or live with relatives until they could get new housing.

"That's something for people to think about, even if it's not real bad now," Grohall said. The same would apply to a work situation. Decreasing the use of stairs or moving equipment in closer proximity to a workstation will allow a person with MS to stay employed longer.

For people who are diagnosed with the disease, Grohall and Heal both said education is the key to understanding what is happening to them, how to cope with the symptoms of MS, and ultimately, how to help those around them help them. They should learn as much as possible about the disease and related research using the Internet or through the MS Society, Heal suggests. "And talk to other people who have MS," she said.

"It is good to have support," Grohall said, "because no matter how helpful friends and family are, they can't understand what it feels like."

Because she understands that need, Grohall is currently organizing another support group in Mat-Su. She has been certified with the MS Society to conduct a support group and did so for six years in the Valley, but a lack of help, combined with health problems forced her to stop, she said. While a simple trip to the store will keep her down for two days following, she said she is ready to tackle another support group. She is not sure which day of the week the group will meet, but she has identified a possible meeting place. Anyone interested in attending the meetings, or who simply wants to call and talk, can reach Grohall at her home number, 745-1344.

In the meantime, researchers are still looking for the key to stopping the disease in its tracks, and hoping to find a way to reverse the damage caused by MS. Immune system studies and stem-cell research have each indicated advances toward a possible cure -- but they are still a long way off.

Scientists at the San Raffaele Hospital in Milan, Italy, recently published results of studies in which they injected adult mice with neural stem cells that appeared to promote tissue repair and clinical recovery in mice with an MS-like disease. If the results seen by these scientists can be confirmed they might represent a step toward finding a way to repair nerve tissue damage in people with MS, according to the National MS Society.

"It's clear that something very exciting is going on," stem-cell-transplant researcher Bill Blakemore of the University of Cambridge, England, was quoted as saying in a Nature News Service article about the San Raffaele research. But others warn not to get too excited yet.

"They seem to have put a very effective bandage on the early phase of the disease," said neurologist Alastair Compston, also at Cambridge, in the same article. It went on, "But this is very different to treating multiple sclerosis in the long term, he points out. Many patients' symptoms worsen without respite -- mainly due to loss of nerve fibres." But MS sufferers see each step, each research project, as a possibility filled with hope.

"You have to learn to pace yourself," Grohall said. "I used to tell people, it's never a good time to have MS, but if you have to have it, now is the best time because of all the research they're doing … I just hope they don't take too long."