Monday March 19th 2018

Patients seek support for new treatment

During a recent visit to a doctor, Vickie Butler was given some reassurance in her struggle to cope with multiple sclerosis.

“‘Don’t worry,’ the doctor told me.’ We’ll have a cure for MS soon,'” she said. “But I don’t have that long to wait.”

Stories such as that and other positive experiences of people finding treatment were what an information session on Chronic Cerebral Spinal Venous Insufficiency (CCSVI) at the Lord Elgin Branch 41, Royal Canadian Legion, was all about, Saturday in St. Thomas.

About 50 people with MS who paid for the controversial CCSVI treatment in clinics in Mexico and the U.S., came to the Legion to share their stories. Others who have MS and might have heard or read something about the treatment, came to listen and educate themselves.

The treatment opens blood vessels to the brain. But it’s not approved — nor funded — in Canada.

Butler can attest to what kind of relief the treatment potentially holds for MS sufferers.

Last year, her friends came together to raise money for her to travel to Mexico for the treatment.

She is happier than ever to have made the effort to get the treatment.

“I still have great results,” she said. “The fatigue, the head fog, is all gone.”

She said her mobility is slightly better. After her treatment and that of a friend, Paula Brown of Chatham, the two women organized the information session.

Butler said her experiences have convinced her there are groups working to spread negative information about CCSVI.

“I really think the negatives have been played on by insurance companies and the medical community. They are hesitant to endorse CCSVI and I’m not sure why.”

She described doctors who don’t understand the pro- cedure or won’t endorse it as those who “are not looking outside the box.”

What’s frustrating for Butler and other MS victims is there is no financial assistance available from the federal or provincial governments to help pay for the treatment.

“We even have to pay for the initial testing,” she said.

Butler’s treatment cost $21,500 and she has claimed it on her 2010 income tax return.

“But I haven’t got my money for it yet,” she said.

Butler said she can’t in good faith, recommend one clinic over another.

The more important thing, she said, is to ensure the clinic follows the treatment protocol set down by Italian Dr. Paolo Zamboni who pioneered research into the treatment.

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