MS patient leaving Canada to participate in study on new research into disease
Research on a recent theory about what causes multiple sclerosis is underway but it's not currently taking place in Canada, so some are leaving the country to participate in new studies.
"I've had MS for six years. I got diagnosed literally the day before I got married, so it's been a struggle," says Nicole Benes.
Benes is headed from Winnipeg to Buffalo, N.Y. to participate in a study looking into a new theory on MS put forward by Dr. Paolo Zamboni. MS is a chronic disease affecting the brain and spinal cord. There is currently no cure for it and Manitobans have one of the highest rates of MS in the world.
Last fall, CTV's W5 broke a story about what is considered a breakthrough for MS patients. Zamboni's study suggests blocked jugular veins lead to what's called cerebrospinal venous insufficiency, or CCSVI, which he believes causes MS.
After the story on Zamboni's research aired, the MS Society in Manitoba was flooded with phone calls and emails from patients and their families.
Because so many people had questions, the MS clinic at Health Sciences Centre hosted an information session.
Neurologist and MS specialist Dr. Michael Cossoy says not many doctors have experience expanding veins and more has to be examined about the risks and benefits of Zamboni's research.
In Buffalo, Nicole Benes will be part of a large study on Zamboni's theory and expects to get an ultrasound and an MRI of her head and neck to determine if her veins are blocked. She also wants to know why she can't be tested in Manitoba.
The MS Society turned down CTV's request for an interview about CCSVI, but its officials say they will have an announcement slated for June about which Canadian doctors will receive funding to begin their own CCSVI studies.
Manitoba Health Minister Theresa Oswald says that the province will let the medical community take the lead.
"The moment our doctors here and across Canada feel a comfort level with taking this next step…performing this intervention on patients, we know that Manitoba will be actively involved in pursuing that, should that decision through research be made," says Oswald.
Nicole Benes, meanwhile, considers herself lucky that she'll be part of the study in Buffalo. But, she wonders what to do if treatments and operations to address CCSVI in Canada won't be available for some time.
"If there is somewhere out there - whether it be Poland or wherever, I'm going to get it done," says Benes. "If this all works out, that would be the answer to my prayers."
- with a report from CTV's Susan Tymofichuk