Calls in Canada for Registry of Bulgaria-Treated MS Patients

Society » HEALTH | October 15, 2010, Friday // 12:10
Bulgaria: Calls in Canada for Registry of Bulgaria-Treated MS Patients Don Morey is getting ready to go to Sofia, Bulgaria to get the Liberation Treatment done for his multiple sclerosis. Photo by the Western Star

Canada may consider setting up a registry, which will gather information about the condition of multiple sclerosis patients, who have received a controversial treatment in foreign countries, including Bulgaria.

"We've been calling for a registry. That means that everyone who went overseas, we could have captured their information," Liberal MP Kirsty Duncan said after meeting MS patients, as cited by local media.

Duncan said the last thing she wants is to "hope monger."

"But there are results. Canada should have been collecting the data and if we had been collecting the data would we still be calling this anecdotal evidence?"

Duncan said she will continue to push for Canada-wide trials.

"MS is a devastating disease ... and if there is even a glimmer of hope that this helps, it is incumbent on us to ask for those clinical trials so people can get diagnosis and treatment here in Canada," she said.

Some of the MS sufferers meeting with Duncan in Regina have paid in the range of ,000 on travel and medical costs to get the treatment and say they have noticed nothing but positive improvement after returning from Bulgaria.

The procedure, called "Liberation Treatment", consists of putting stents in the veins of the neck to drain the blood from the brain properly. The work is done in a similar fashion to inserting a cardiac catheter.

Developed by Dr. Paolo Zamboni, an Italian researcher, the procedure involves angioplasty to help ease the flow in beck veins of blood from the brain to the heart.

According to news reports, Zamboni believes narrowed or blocked veins force blood to move backwards or reflux back into the brain and spine, causing damage. He's termed the condition chronic cerebrospinal venous insufficiency, or CCSVI.

Many MS specialists say the procedure is experimental at best and could be dangerous.

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Tags: MS, Liberation Treatment, multiple sclerosis, Bulgaria, canada, Paolo Zamboni

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