Multiple sclerosis sufferer hits out at lack of local knowledge
Two years ago when Mrs. Gracelyn Monterro complained about mood swings, dizzy spells, and numbness from her chestdown, neither her doctor nor anyone at the hospital knew what was wrong.
It was only after four trips to a neurologist in New York that the 28-year-old mother of two learned she had Multiple Sclerosis -- a disabling disease which attacks thousands in the US and UK and at least 16 locals.
MS, a degenerative disease caused by the scarring of tissue surrounding the nerves, has been around for at least 50 years.
The disease is most common among people in their late 20s and early 30s who live in temperate climates. There are also more women than men with the disease.
Its symptoms, which vary among MS sufferers, include blurred vision, temporary hearing loss, weakness of the arms or legs, clumsiness, tingling and numbness in the arms or legs, and memory loss. If left untreated, it can lead to blindness, loss of hearing, and paralysis.
Yesterday Mrs. Monterro told The Royal Gazette she was shocked to learn that her doctor, the hospital, and the community on the whole knew very little about MS.
And the bank employee, whose initial treatment abroad cost $2,100, questioned why there was no neurologist in Bermuda to diagnose such diseases.
Mrs. Monterro, who praised her employers at the Bank of N.T. Butterfield for "tolerating'' her absences and Bermuda, Fire & Marine who covered most of medical expenses, said the trips were necessary because she was told that the tests could not be done in Bermuda.
"This is basically because we do not have a neurologist,'' she said.
While praising Internal Medicine Consultant Dr. Marion Watlington for her "excellent'' assistance, Mrs. Monterro said: "We've got to get a neurologist in here''.
"The hospital staff have been good,'' she said. "But they don't know enough about it (MS).'' Mrs. Monterro said she needed to have surgery on an enlarged ovary. But because "nobody here knows'' whether anaesthesia can be administered to an MS patient, doctors at the hospital have refused to operate.
Her complaint came on the heels of a request by Bermuda Healthcare Services director Dr. Ewart Brown to bring a neurologist to the Island.
Dr. Brown last week disclosed that he had lined up some 20 patients last summer to meet with visiting neurologist Dr. Michael Batips who is the vice president of neurology at Washington Hospital Centre in Washington DC.
But he said Government rejected the offer because local general practioners were not allowed to make specialist referrals.
Dr. Batips, who has been in private practice for the past 15 years and has done research at the National Institute of Health, last night confirmed he or one of the neurologists in his practice would be interested in coming to Bermuda at least on a bimonthly basis.
So far the only treatment recommended for MS has been steroids, a moderate amount of exercise, and a good diet. But Mrs. Monterro said she understands tests are being carried out on a new drug in the US.
Mrs. Monterro is a member of the Bermuda Multiple Sclerosis Society -- founded this year by jazz musician Mr. Shine Hayward who is currently in remission.
She said the group was attempting to educate the public about the disease.
But, she added, the small group needed funds in order to set up an office with literature and to assist MS sufferers who cannot afford the expense of overseas treatment.
The society has already profited from some fund raising events, including an auction held in November by Wilson Jewellers which raised $200 for the society.
But Mrs. Monterro and her mother Ms Venita Smith said the group can use more help and they urged the public to attend a fund raising Mother's Day concert at Allen Temple AME, featuring former Platters lead singer Ms Sandra DeSilva who is now with the Brooklyn Tabernacle Choir.
For further information call Mrs. Monterro at 236-2325 or MS Society treasurer Miss Yvette Butterfield at 292-6256.
SHEDDING LIGHT ON MS -- That is what Mrs. Gracelyn Monterro hopes to do in Bermuda where at least 16 people suffer from the disabling disease.
