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Living with Multiple Sclerosis

April 03, 1998|By KATE COLEMAN

by Kevin G Gilbert / staff photographer

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msLiving with Multiple Sclerosis

It's hard to imagine being pleased about being diagnosed with multiple sclerosis, but both Kim Bockstanz and Dorothea "Cissie" Kretsinger say they were happy to have the final word on what was wrong with them.

"I felt like I was the laziest woman on the face of the earth," says Kretsinger, a 46-year-old resident of Boonsboro.

She wasn't lazy. She was tired.

Fatigue is a common symptom of the chronic disease of the central nervous system that affects an estimated third of a million Americans, with nearly 200 new cases diagnosed every week. It can take several months or even years to get a definitive answer. Recent advances in medical imaging technology - particularly MRI - are helping to clarify diagnosis, according to a National Multiple Sclerosis Society brochure.

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In MS, myelin, the fatty tissue surrounding and protecting the nerve fibers of the brain and spinal cord, is damaged. Myelin is lost in multiple areas, leaving scars called "scleroses." Without myelin, nerves have trouble conducting messages to and from the brain.

Bockstanz, who lives in Williamsport, was diagnosed in 1985 but believes the mild stroke she had at 22 - a vicious eight-day headache that affected the vision in her right eye - was an early sign of MS. Referring to her fatigue - and quick with a wisecrack - Bockstanz says she's "37 going on 70."

The disease has changed their lives, but they don't dwell on it, Bockstanz says. "We live one day at a time - just like everybody else."

In 1996, Bockstanz received training to become a Friendly Visitor/Telefriend for National Multiple Sclerosis Society. She now regularly visits or calls 26 people with MS, and Kretsinger is one of them.

Kretsinger was referred to Bockstanz by Robin Turner, coordinator of MS Society's Hagerstown office.

"People need somebody in the same boat," Turner says. She describes Bockstanz as upbeat and a good listener.

Kretsinger relies on an electric scooter to get around her house, but her wheelchair is more easily transported in the car.

Bockstanz has a wheelchair, but doesn't need to use it - not now. The course of MS is unpredictable; it's different for everyone who has it. Bockstanz compares it to fingerprints.

MS ranges from very mild to steadily progressive. It affects twice as many women as men, and most often strikes people who are in their 20s and 30s. Although genetic factors make certain individuals susceptible to MS, there is no evidence that the disease is directly inherited.

Symptoms may include tingling sensations, numbness, slurred speech, blurred or double vision, muscle weakness, poor coordination, muscle tightness or spasticity, problems with bladder, bowel or sexual function, forgetfulness, confusion and paralysis. The symptoms may occur in any combination, may come and go and may range from mild to severe.

Bockstanz and Kretsinger have tried medications approved for the treatment of MS, but stopped taking them because of side effects and lack of visible results. They both are doing bee venom therapy - an alternative to drugs, according to Bockstanz. Getting stung by honey bees reduces their fatigue and helps with pain and bladder problems, they believe. The treatment is controversial because no scientific studies have been done on it.

Bockstanz is planning a dance and get-together in May with the friends she has made as a volunteer for the MS organization. But she'll think about that after the MS Walk April 18. Although she's unable to hike the 6.25-mile route, Bockstanz already has raised $200 in pledges.




Workshop set for April 25

"Living with MS," a workshop to answer questions about adjusting to a diagnosis of multiple sclerosis, will be Saturday, April 25, from 9:30 a.m. to 12:30 p.m. at Trinity Evangelical Lutheran Church, 64 S. Main St., Boonsboro.

The program, sponsored by Western Maryland branch of the National Multiple Sclerosis Society, Maryland Chapter, will include a panel of speakers and time to share what MS means to people who have been recently diagnosed and their loved ones.

The $5 registration fee includes refreshments. Registration deadline is Friday, April 17. For information, call Robin Turner at 301-791-5754.

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