By Judy Siegel-Itzkovich
(December 17) - Eight out of 10 MS patients here are reluctant to reveal that they are sufferers, even to close friends or relatives - which is why last week's MS Awareness Week was so important.
Perhaps the worst
thing about multiple sclerosis is not the daily injections of medications,
pain or disability - but the
An attack of the neurological, autoimmune disease can occur anytime, forcing the patient to put his life on hold, get short-term steroid treatment and hope that his normal neurological function will return instead of leaving him with deficits.
Any feeling of weakness, fatigue or numbness raises the fear that yet another attack is about to begin.
No two cases of MS are alike, says Prof. Oded Abramsky, chairman of the neurology department at Hadassah-University Hospital in Jerusalem's Ein Kerem and a leading clinician and researcher on MS.
Some people have only one attack in their lifetime. Many others have such a mild condition that they don't need ongoing care, will live to be 80, and die of something else.
Some with relapsing-remitting MS will get periodic flareups and full or partial recovery, while the 10% of patients with primary progressive MS will get steadily worse.
Some with relapsing-remitting MS will, after years or decades, develop secondary progressive MS. Even with patients who have progressive MS, it could take 10 or 15 years before they have to get around in a wheelchair.
"The public knows the case of cellist Jacqueline du Pr*, who had progressive MS and declined very quickly until she died of complications," says Abramsky, "but it was a very rare case."
Although MS has been diagnosed in over 350,000 Americans and about 5,000 Israelis the disease is poorly understood among the public. The Israel Multiple Sclerosis Society, which organized National MS Awareness Week last week, sponsored a poll which found that more than half of the population are completely ignorant about MS.
Fifty-three percent of the 500 people asked knew little or nothing about the condition and some erroneously thought it was infectious or causes immediate death.
Nearly two-thirds of those queried thought there was absolutely no treatment, when in fact there are several medications - many developed in Israel - proven to reduce the frequency and severity of attacks.
Eight out of 10 MS patients here are reluctant to reveal that they are sufferers, even to close friends or relatives. Some may fear dismissal from their jobs or difficulty in getting hired.
More than half of the patients are not members of the MS society, even though it offers them assistance.
The awareness week was thus regarded as important to inform the public, the society says.
THERE IS still much to be learned - and unlearned - about MS. The disorder had been thought to be much more common in women than in men, but it now appears that there are only three women patients for every two men.
Until recently it was believed that the farther countries are from the equator, the higher the incidence of the disease. But Abramsky says this is not accurate, pointing out that there are countries with a lot of daylight and higher rates of MS, while Lapland - which is as north as one can get - has no MS at all.
"The disorder is four times as common among Jews of Ashkenazi origin as among those of Oriental origin; when immigrants of different origins came it was theorized that the prevalence would even out in subsequent
generations, but this just didn't happen," Abramsky adds.
There were also claims that mercury compounds in the amalgam used to fill dental cavities could trigger MS; but the Hadassah neurologist says this has been completely disproven.
WHAT IS known about MS is that it involves multiple areas of inflammation and scarring of the protective myelin covering of neurons in the brain and spinal cord, disrupting nerve communication.
The problem is that the body's own immune system mistakenly recognizes the myelin as "foreign" and attacks this tissue. An MS patient experiences varying degrees of neurological impairment depending on the location and extent of the scarring.
The disorder is most commonly diagnosed between 20 and 40 - a person's most productive years - but it has also been known to begin at younger or older stages of life.
While the cause of MS is not yet known, researchers increasingly believe that a virus may provoke the illness in people with a genetic disposition for it, but the disease is not directly inherited like Tay-Sachs disease, for example.
Symptoms of an attack include fatigue, which can be overwhelming, though a person may appear well. In addition, loss of coordination, muscle weakness, spasticity, memory problems, numbness, slurred speech and visual difficulties often occur.
The most acute symptoms, but the least frequent, include paralysis, muscle cramps, bladder or bowel problems, and sexual dysfunction.
It can take years for a doctor to diagnose MS clinically, using diagnostic tests such as MRI (magnetic resonance imaging) and evoked response potential. Abramsky says that at initial diagnosis it's impossible to know what course the disease will take and who will have the mild, gradual or progressive type.
Although there is as yet no cure, MS patients are fortunate that in the past decade several medications on the market have been proven to significantly reduce the frequency and severity of neurological flareups.
Copaxone, a drug developed over two decades by Dr. Dvora Teitelbaum, Prof. Ruth Arnon and Prof. Michael Sela at the Weizmann Institute in Rehovot, is injected daily, and clinical trials are now being conducted on an oral drug to see if it is as effective as the injection.
Immunoglobin treatment based on natural substances in the body is offered by neurologist Dr. Anat Ahiron at Sheba Hospital.
Abramsky says that some studies have shown immunoglobins may bring about clinical improvement, but show no change on an MRI scan.
There are also natural and genetically recombinant beta-interferon under various brand names such as Ares Serono's Rebif (also developed at the Weizmann Institute), Schering's Betaserone and Biogen's Avonex.
Each pharmaceutical company maintains that theirs is the best anti-MS drug.
Abramsky notes that many treatments have been tried on animal models of the disease in the lab, but the fact that a drug works on mice or rats doesn't guarantee it will be effective in humans.
One promising avenue, however, is alpha-feto proteins, which are naturally produced by the fetus during pregnancy to prevent the mother's immune system from attacking the "foreign" tissue developing in her uterus.
Because of this phenomenon no pregnant women get an MS attack during the second trimester; these proteins are very strong immunosuppressive substances and it could be that they will constitute important in MS therapy in the next five to 10 years, Abramsky predicts.
KARIN BARZILAI, a 33-year-old former physical education teacher and mother of three young children, noticed her MS symptoms about three years ago near the end of her pregnancy with her last child. "They couldn't give me an MRI scan because of the baby, so I had to wait."
Barzilai, who lives with her husband and children in Ramat Gan, says she had never even heard of MS before she was diagnosed.
"I went blind in one eye, but, fortunately, my sight returned again."
The bad news was very difficult to cope with. "I thought my life was over. It's hard to fight against the fear of disability."
A believer in the body's ability to boost the immune system and fight disease, Barzilai is very unusual in that she receives immunoglobin injections periodically at Sheba but has turned down all drugs - even steroids - when she has an acute attack.
"I felt a lot of anger - why did it happen to me? But I refuse to give up my dreams.
"I believe there's an emotional part to the physical disease. I look inside and try to help myself. So I've gradually come back to myself, even though I still have far to go."
Fortunately Barzilai is able to walk, even though she has little feeling in her legs and sometimes loses her balance and falls.
"I hope the MS Awareness Week increased knowledge about the disease. There are productive people with MS in key positions all over society. There's even a member of the Knesset with it," says Barzilai, who is responsible for cultural events in an MS support group in her area.
"I want to promote
the message of hope, also that society must have more patience and respect
for people who are disabled."