More MS news articles for June 2004

The loneliness of coping with MS

Friday, June 11, 2004
Kenneth Bandler
International Herald Tribune

'You look a lot better than you should," declared the neurologist. Then, in a statement I mistakenly thought would offer comfort, he declared me at "high risk" and wrote a prescription for interferon. That was in May 2003.
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Though I had been diagnosed with multiple sclerosis in 1990, doctors, reviewing a fresh MRI report, confirmed what I had long feared. The long dormant disease had advanced.
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My first reaction was to reject the recommended treatment. Why would I want to stick needles into myself three times a week forever? But the alternative, the "high risk," is potential further deterioration of the nervous system. Interferon can slow down that process, but there is no cure.
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Totally unpredictable, MS creates an agent that eats away at myelin, the sheath that protects nerve fibers in the brain and spinal cord. How much myelin is destroyed affects the extent of MS, from numbness to more severe bodily impairment. It also can adversely impact cognition.
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For me, it began in December 1989, at age 33 - a prime age for the onslaught of MS. I was traveling frequently between New York and Tel Aviv, writing about Jewish-Arab relations.
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During one of our regular trans-Atlantic phone calls, I told Martha, my wife, that I was experiencing the strangest sensations in my feet. They often felt cold, particularly in the evenings.
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While I was trying to understand what was happening to me, long distance anxiety had been rising in my wife and parents, who met me at Kennedy Airport in New York. They were relieved to find me walking fine, carrying my own suitcase. I would soon learn that with MS, one often looks much better than one feels.
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Initial neurological tests proved inconclusive. I was advised to contact the doctor if the symptoms returned.
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They did four months later. After two hours in a MRI machine, I learned in April 1990 that I had MS. For Martha and my parents the first thought was my aunt, stricken with MS at age 35, and now in a wheelchair.
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It is easier, perhaps, for the patient to put matters in perspective. Not ready to panic, I listened carefully to my neurologist as he explained that MS comes in different forms. Mine was mild. It could remain that way forever, or, at any moment, it could worsen.
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As the neurologist discussed the uncertain path ahead, Martha and I were forced to consider the possible effects of this disease. Approaching our anniversary we pondered the vow, "in sickness and health," that we had recited during a beautiful sunset wedding ceremony only five years earlier.
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I went about life normally. After the third annual visit to the neurologist, who found no changes, I decided to not return. I stopped attending MS meetings where I met individuals with canes and wheelchairs, encounters that deepened my concerns. Yet seeing people who had conditions apparently worse than mine, and who spoke with pride about their accomplishments, had a salutary effect.
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In early 2003, numbness in my hands and feet was occurring more frequently and often lasting longer, sometimes extending throughout the arms, legs, and even my face. Bouts of fatigue began coming with greater frequency.
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As the public relations director for a national advocacy organization, accustomed to working long hours and being available around the clock, the fatigue is presently the biggest nuisance - and one of the loneliest aspects of the silent MS, silent because only I know what is happening to my body.
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Outwardly, I seem fine. If colleagues notice a drained look, I can easily dismiss it as too little sleep, or just feeling under the weather. But dealing with this and other hidden effects of MS is just as unnerving when I am out to dinner with family or friends, or coaching my nine-year-old daughter's soccer team.
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The MRI last year revealed that myelin erosion in the brain had increased, impacting my nervous system to the point that seeing MS specialists was necessary. The MS center at Mt. Sinai Hospital, New York, has become part of my family.
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In a way, I have been fortunate. Since I was first diagnosed 14 years ago, several drugs have been approved to help manage the disease; research continues to find a cure, and there is a remarkably well organized support system that includes the MS society, drug companies and others involved in delivering care.
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Yet the truth is that the disease has no playbook. Daily surprises are the norm. After a year of self-injections I feel like a pincushion, and at least once a week I want to quit. In the end, even with the best support network, when an MS attack strikes, one is very much alone.