By Sue Book
Sun Journal Staff
She aced exams and tennis and was on her way to becoming a doctor. Then Renee Barnwell got multiple sclerosis and it changed her life forever.
She mostly walks with a cane now at 44.
But some people are going to do some walking for her and the 400,000 other Americans with MS in next Saturday's New Bern fundraiser walk for the local chapter of the National Multiple Sclerosis Society.
The walkers, who will start at Union Point, will take pledges from friends and coworkers. Registration is 1 p.m. for those who have not signed up on the MS Web site www.encms.org or phoned the state office at 1-800-FIGHT MS (ext. 1).
The national society is the largest private contributor to MS research, giving $13.4 million yearly to fund research for treatments that were totally unavailable a decade ago.
MS is a disease of the central nervous system with no known cause or cure. It causes lesions in the spinal cord and brain. It is a disease of dismal incapacitation.
Life altering change has been the story of Renee Barnwell's adult life and that of her New Bern family, Dr. Sidney and Mary Barnwell. They agreed to share the story of MS impact on their lives to help their community understand the disease shared by an estimated 400,000 Americans and encourage community support.
Renee was a high school honor roll student and tennis ace, helping New Bern High School's Lady Bears break records in 1975, and heading off to Davidson by 1978 on a pre-med track.
The daughter of a medical doctor and cyto technologist, she had the prescription for future success and every indication of getting it filled. She had ambition and energy and a supportive family.
"I remember having a tingling in my neck," she said of the 1977 early signs of the multiple sclerosis, the disease that changed almost everything about her life except her spirit and her family's loving support.
"We had the doctors look at it," said her mother, Mary Barnwell. "He said it was noting to be worried about."
Just after graduation, Renee went Guyana, South America -- the birthplace of her father, who serves as physician for Craven County Health Department. While there she began feeling the odd sensation of raindrops on her skin. It passed. She went off to college to pursue the goal she shared with her dad, to follow in his footsteps.
"During the first semester she experienced more tingling and numbness, especially in the neck region," her mother said. "That continued along with some cognitive problems. This was a young lady who had been an A student, who didn't have any problem learning and remembering."
"She had strange forgetting" as she studied math and physics and chemistry, Dr. Barnwell said, subjects in which she excelled.
"Because of the problems, in the third year she decided to come back to the coast to be near home and finished her degree on time, on the honor roll at ECU," Mary Barnwell said.
"She entered medical school the next fall but was still plagued by numbness and weakness in her extremities and some vague cognition problems, sort of ill defined," explained Dr. Barnwell, until the introduction of Magnetic Resonance Imaging in 1984 helped diagnose her MS with pictures of the lesions on her brain.
"This gave us something to work with," he said.
But the rigors of med school and the limitations and uncertainty of MS signaled the end of Renee's hopes of being a doctor.
Determined to complete graduate school, she transferred to N.C. A. and T. in Greensboro. "I finished all the graduate work in 1988," she said, and received a graduate degree in biology.
By that time she walked with a cane, had difficulty speaking and some vision problems, but she could still drive.
Then she was involved in an automobile accident. The attending physician insisted she was having a stroke because he was not familiar with the symptoms of MS, Mary Barnwell recalled.
Disease and treatment
The multiple in MS refers to more than one episode of disease symptoms that occur when the spinal cord's myelin sheath, or sclera, surrounding a section of nerves erodes. The nerves essentially short out, causing mixed signals from the brain to various body locations and functions.
The effects may be as mild as the numbness and tingling experienced originally by Renee, to those severe enough to cripple or blind or render the response of organs unable to receive signals for various body functions.
There were few treatments then, only steroids to help the body's autoimmune system defend itself against unknown attackers of the central nervous system.
There are many theories about the cause of the disease. Studies, including one published March 26 in the Journal of the American Medical Association, point to the possibility of exposure to an infection like mononucleosis as increasing the likelihood of MS.
It comes in different ways to different people, and to the same people, and over time it has been given a variety of names based on severity categories.
The least debilitating type is usually called recurring-remitting MS and often comes and goes leaving minor permanent damage. Primary progressive is another and secondary progressive or chronic debilitating, are others. The different levels respond to different drugs that now include Betaseron -- that Renee used for several years beginning in 1994 -- Avonex, Copaxone, Novantrone and Rebif. They are all injections and expensive -- upwards of $10,000 a year -- and provide various degrees of effectiveness versus side effects.
The disease made its mark on Renee, who said, "I still walk around but not as fast as I want too...basically with my cane."
Her last MRI showed her status as stable and she is not now taking the ever-other-day injections.
She has an electric mini-scooter that helps her keep up, get from the car to classes at Craven Community College as she in new directions for a way to contribute to her own support.
She taught biology briefly but Dr. Barnwell said the stress of ten to 14-year-olds was more than she could manage.
Stress and getting overheated appear to intensify MS symptoms in many with the disease.
Though a fairly traditional medical family, the Barnwells ventured into the areas of homeopathic medicine, helping in Renee's search for better quality of life.
They tried everything from touch therapy to curry. They laugh together as they recall the stories like when Mary Barnwell accompanied her husband to a medical convention in Baltimore and a friend told her about the BVT, or Bee venom therapy.
The ladies drove quickly and quietly -- there were doctors everywhere -- to Waldorf, Md., to see Pat Wagner, the Bee Lady who swore by the theory that bee stings could halt the progression of MS.
Once home, then in Nashville, Tenn., she got bees by the jar from a beekeeper and Renee took the stings, graduating from one to as many as 36.
Renee said a kind of euphoria resulted, but no there was no effect on the disabling effects of MS.
"My family has helped me out a lot," said Renee.
Her parents said that throughout her struggle to cope, her spirit has remained strong, helping the family including a supportive brother and sister cope.
"It has been a family affair," said her mother, who has supported MS Society efforts in New Bern and Nashville. "You have to keep going and Renee did pursue another career" in cyto technology, or microscopic examination of cancer cells, but MS effects halted that as well.
She is looking forward to continuing to learn and relearn in hope the
next change brings more promise for her and others.
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