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Social media drives MS controversy


The mystery of MS and its prevalence in Canada

Canada has one of the highest rates of multiple sclerosis in the world, according to an international survey.

Gael Hepworth holds her dog Gregory in her Toronto home. Hepworth suffers from multiple sclerosis and attends a support group which provides therapy to help people deal with the emotional aspects of having a chronic illness. Gael Hepworth holds her dog Gregory in her Toronto home. Hepworth suffers from multiple sclerosis and attends a support group which provides therapy to help people deal with the emotional aspects of having a chronic illness. (Chris Young/Canadian Press)The 2008 Atlas of Multiple Sclerosis showed MS strikes 133 out of every 100,000 people in Canada, the fifth highest rate among countries surveyed between 2004 and 2005.

Prevalence was higher in the United States, Germany, Norway and Hungary, according to the World Health Organization and the Multiple Sclerosis International Foundation, which published the report.

The MS Society of Canada says the rate of MS in this country could be as high as 240 per 100,000 people.

Some people with MS experience little disability during their lifetime. But up to 60 per cent are no longer fully able to walk 20 years after onset, which has major implications for their quality of life and costs to society, the report said. Symptoms appear around 30 years of age on average.

"The Atlas of MS reveals how these implications impact women more than men, by at least two to one, at an age when they are starting a family and developing a career," said Dr. Benedetto Saraceno, director of the WHO's department of mental health and substance dependence.

Canada has been a leader in terms of diagnosing, treating and working to improve the quality of life of people with MS. But keeping people with MS employed remains a challenge, the Multiple Sclerosis Society of Canada said.

Canadian women are more than twice as likely to get multiple sclerosis than men, according to a major study published in November 2006. Among those born in the 1930s, about two women contracted MS for every one man, at a ratio of 1.9 to 1. For those born in the 1980s, the incidence has grown to exceed 3.2 cases for every one case among men.

Why the sudden increase in the neurodegenerative disease, which attacks the brain and spinal cord, causing inflammation and damage that can lead to paralysis and sometimes blindness?

We don't know. We don't know what causes MS. We don't know what cures MS. The whys and wherefores of this mysterious disease have bedevilled scientists, health-care workers and victims for nearly 200 years.

Recent speculation about the cause has ranged from genetics to environment to vitamin deficiencies to even the birth control pill.

An Italian vascular surgeon — Dr. Paolo Zamboni of the University of Ferrara — has been exploring the theory that MS is caused by blocked veins in the neck or chest, preventing blood from draining properly from the brain. He has developed a surgical technique to treat the problem.

A team at the University of Buffalo — led by Dr. Robert Zivadinov, who worked on an earlier study with Zamboni — has recruited hundreds of patients in Canada and the U.S. to explore the theory further. The patients will undergo specialized neck scans to look for narrowed veins.

MS rates higher in northern lattitudes

Health officials consider a country to have a "high" rate if they have more than 30 cases per 100,000.

The incidence among the provinces varies, from a high of 340 cases for every 100,000 people in the Prairies to a low of 180 cases per 100,000 in Quebec, according to a 2005 study by researchers at the University of Calgary.

Those aged 15 to 40 are most at risk. One out of every two Canadians know someone with MS.

People who live closest to the equator have the lowest incidence of MS.

However, that doesn't explain why the disease is nearly absent among Canada's Inuit in the High Arctic and among indigenous people in North America and Australia, or why it is rarely found in Japan.

Study suggests MS is environment-based, preventable

The study on the rising incidence of women with MS was done by a team of researchers led by George Ebers, a professor of neurology at the University of Oxford. It appears in the November 2006 issue of the journal Lancet Neurology.

The higher incidence of MS among women may not be bad news, according to the researchers — because it may help to shed light on what causes the disease.

"What is going on here is something presumably that is preventable," said Ebers, who was the lead author of the study.

"We just need to find out what it is in the environment. Because it has to be in the environment: your genes don't change over two generations, three generations."

Higher estrogen levels, less sunlight blamed

There has also been speculation that because MS is generally more prevalent in colder climates far north of the equator and far south of the equator, it may be due to vitamin D deficiencies.

The body produces the vitamin in response to sunlight and so vitamin D levels fall off in colder countries and in winter because the sun's rays aren't intense enough.

Because of the rising incidence of MS among women and because it seems to have started in the 1960s, many others have speculated that the cause may be connected to higher levels of the hormone estrogen due to the introduction of the birth control pill.

But Ebers, who spent 22 years at the University of Western Ontario in London, Ont., before going to Oxford, rejects these factors as likely explanations.

"I think one of the things one thinks of here is either that it's going to be something in the environment or it is going to be an environmental interaction with genes."


 Alberta committee to probe MS procedures next week


Waterloo company facilitating demand for new MS treatment


Just Treat 10

par CCSVI in MS Toronto, mercredi 18 août 2010, à 05:06

What is the problem with doing a CCSVI Treatment Study of 100-people?


Why is this so impossible to get going?


Because so far all we got is talk from our Federal and Provincial Government.


Frankly if the Provinces would work together, this could all be resolved in weeks. The drug companies are not going to be interested in funding this, so who else will do it?


If we could get 10-Provinces to work together and each treat 10-people, we would be able to have the results of a treatment study of 100-people very quickly.


For example, Dr. McDonald already did 6-angioplasty treatments in Barrie Ontario in a relatively short time. So we know this can be done quickly.


Dr. Sandy McDonald said on Parliament Hill:

"Angioplasty is a well-known, universally practised procedure. Interventional radiologists do it virtually every day. It is very low-risk. Angioplasty is commonly used for venous obstructions (Budd-Chiari syndrome, May-Thurner syndrome, caval interruption). Dialysis patients commonly require angioplasty to repair a venous stenosis (caused by a dialysis catheter) and this can be in the jugular veins. There is nothing special about venous angioplasty. The angioplasty we speak of for jugular and azygus veins is a 2-3 hour out-patient visit done under local anesthesia."


So to get this moving, each Province would need a Neurologist to do a proper assessment of each person before their treatment. Then do the minimally invasive angioplasty, and then do a follow up 4-weeks later.


Also, we should soon have the Neuro approved results from the BNAC CCSVI Safety Study in Buffalo. This was done in June, so we shouldn’t have to re-test the obvious, over and over. Therefore a Canadian Safety Study is not required, we would just need a Treatment Study.


Plus when you consider there have probably been 2,000 angioplasty treatments safely done around the globe in 2010. I don’t hear any evidence that anyone got worse from this treatment. The adverse effects have been minimal. People flying overseas, or going to the USA for their Liberation are not coming back to Canada in body bags! They are coming back to a new life, where a vast majority see multiple MS symptoms reduced.


All of the Vascular Doctors who have done this treatment have already said it’s very safe. Plus the risks of all forms of angioplasty have been well documented for 40-years.


So am I missing something here?


Is it too much to ask 10-Provinces to do 10 $1,500 dollar angioplasty treatments and 10-Before and After Neuro assessments?


We should expect nothing less.





Quote from SnowDog456:

“The problem experts complain about is there have been no clinical trials. There will never be any clinical trials if nobody sponsors them, and there is nobody to sponsor them except health insurance companies in the countries most affected by MS. That is, Canada and the UK. That means our provincial Medicare systems should sponsor the trials.


After a large clinical trial of a few hundred procedures, then a decision can be made about accepting the surgery as a standard procedure.


I will just add, this will be one of the few surgical procedures that has ever been subject to clinical trials before being insured. The general rule is, if there is even anecdotal evidence it works, if a surgeon will do it, and it is not hugely expensive, it is covered.


I suspect in this case we are requiring proof because drug companies are concerned about a few thousand money-trees drying up.”"

*Manitoba: National trial of MS treatment needed


 Innovative Revolutionaries


MS treatment improves vision

"Mark Harrison is seeing the world differently after traveling to Albany, New York earlier this month for a medical procedure to alleviate his MS symptoms.

Harrison, 27, has been following the work of Italian vascular surgeon Paolo Zamboni who has proposed a link between Multiple Sclerosis (MS) and constricted veins in the neck, a condition he calls CCSVI, or chronic cerebrospinal venous insufficiency.

Zamboni found poor blood drainage may cause a build up of iron in the brain, a condition associated with MS.

His work led to many people with MS traveling outside of Canada to get their veins opened, using angioplasty and stints. Because the procedure has not undergone formal medical trials it is not offered in Canada.

When Harrison was offered a chance to have his constricted jugular vein opened at the Albany clinic, he took it.

On Aug. 2, Harrison had four stints placed in his left internal jugular vein. The stints are meant to open the vein allowing the blood to flow normally and drain properly from the brain.

Harrison said he could hear the vein opening and felt the effects while he was still lying on the operating table.

Although he was drugged, Harrison was conscious during the procedure and said his sight improved instantly. He said the colour of the wall was suddenly more vivid.

“The green was so brilliant,” he said.

Plagued with cold hands and feet since he was diagnosed with MS eight years ago, Harrison said they instantly felt warmer.

Before the procedure Harrison said he would see double and triple in his left peripheral vision but now his vision is completely normal.

MS manifests differently in each person. Harrison’s speech is slurred and he has tremors.

Since having the procedure his speech is clearer, he can swallow more easily, is steady on his feet and says he feels more grounded.

Harrison said after the procedure he walked down nine flights of stairs without holding onto the banister and jumped in the air and landed without losing his balance.

Two days after the procedure he wrote his name for the first time since 2006.

The next week Harrison was no longer able to write his name because his hands still shake when he tries to manipulate a pen or eating utensils, however Harrison said he is thrilled that he can now hold a camera steadily to his face and take photographs for the first time in years.

“It’s like getting my life back,” said Harrison. “This is it my life is gonna change. I’m back but I’m wiser.”

Harrison said he takes nothing for granted. While he has had some setbacks since the procedure he also sees improvements everyday.

Harrison had to charge the clinic’s $13,000 U.S. fee to his credit card but said it was well worth the expense.

He has an appointment to see cardiovascular thoracic surgeon Sandy McDonald in Barrie on Sept. 2, when his blood flow will be measured using ultrasound imaging.

Harrison said he is still willing to be part of any upcoming studies.

In the meantime, Harrison is planning to begin looking for work in Wasaga Beach.

He has a diploma in hotel and resort operations and is trained as a personal support worker but has been unable to work for the past two years."

*Sclérose en plaques: le Manitoba propose une coordination interprovinciale d'essais cliniques de l'angioplastie


Petition to:

deliver on the rights of every person with multiple sclerosis to world-class healthcare, to independence and to support to lead a full life.


MS trials: we need to do this


Sujet : Possible stop to Multiple Sclerosis could be just one trial away, however, pharmaceutical companies not interested


SammyJo’s CCSVI 9 Month Update


Alberta to investigate best ways to help MS patients


MP urges action on MS treatment


Double standard for big pharma bribes


 Quebec ready to collaborate on controversial MS procedure



Click to Enlarge
David Smith/For the Telegraph-Jo
Dustin Blyth, who suffers from multiple sclerosis, recently underwent a procedure called liberation treatment at theAMEDS Centrum clinic in Poland.

A hospital in Poland was offering a quality of life he never thought he'd get living with multiple sclerosis.

"They called and said to be there in a few weeks. I couldn't believe it," he said in an interview.

Earlier this month, the 22-year-old, with his family by his side, travelled to Warsaw, Poland for a procedure that, if successful, can improve the quality of life for those living with MS.

And so far, so good for the Blyth family.

When Dustin was 10 years old, he hopped off the school bus one day with a limp.

"We just thought it was a 10-year-old active kid, that he might have fell and hurt his knee," Darryl Blyth, Dustin's father, said in an interview.

His parents started to worry when the limp didn't go away as the months and years passed.

Doctors told his parents not to worry.

"They came back and thought it might be a mild case of cerebral palsy," Darryl said.

For eight years, Dustin saw specialist after specialist. None could come up with a diagnosis.

Then, when he was 18, he was referred to a specialist in Montreal who diagnosed him with MS.

"If your son or daughter falls down and scrapes their knee, you get them a Band-Aid. If they catch a cold, you run to the drug store and you make them soup. But when it comes to any disease, it touches you more," Darryl said.

Dustin lived for the next four years with the disease, watching it worsen as the days passed. "I was on crutches and I couldn't stand up for more than five minutes at a time because my legs would start to shake," he said.

Watching his son go through the disease, Darryl felt helpless until he heard about an experimental treatment in Buffalo. They were accepting 1,000 multiple sclerosis patients from Canada and the United States, but unfortunately, Dustin didn't make the cut.

But not too long after, Darryl heard about the Liberation Treatment in Poland, a controversial procedure which revolves around a theory that narrow veins cause a buildup of blood and iron in the brain, resulting in vertigo, fatigue, muscle spasms and other symptoms experienced by MS sufferers. Expanding the constricted veins would increase blood flow to the brain and alleviate MS symptoms.

The procedure is considered controversial because some doctors believe it's dangerous to manipulate veins.

The Polish clinic told the Blyths they were booked up until 2012. In the meantime, Dustin found out he was going to be a father.

"He sat at the kitchen table and said he's excited but what kid is going to look up to a parent who can't take care of himself," Darryl said.

Darryl immediately contacted the clinic, hoping they'd hear his cries for help. Then in July, they called. There was a cancellation and Dustin could have the appointment on Aug. 5. The Chipman community immediately rallied to raise money for the family.

Dustin wasn't sure what to expect from the procedure. He definitely didn't expect to feel results as soon as he did.

"Just as soon as they pumped up the veins I felt a warm tingling sensation go all through my body and when I was laying in bed, I could just notice I could flex my muscles better," Dustin said.

The day after the surgery, he was able to walk 15 feet, something he hasn't done in several years. From that point on, he's noticed drastic improvements in mobility and sensation.

"I can stand up longer. I can move around easier. My legs aren't as tight. I definitely have more mobility. My legs were always cold ... and now my legs are nice and warm. I can move my toes better. Just getting up and standing up is a lot easier. My legs used to shake and tremble. That's calmed down quite a bit."

And since the surgery, he no longer has a stutter.

Though Dustin is still using crutches to get around, Darryl is confident his son will be free of them in four to six months once his muscles have time to build up.

Darryl said he wants to start lobbying the Canadian government to make the procedure available to Canadians living with the disease.

Dustin isn't the only Canadian to receive the treatment. In Poland they met a woman from Minto and another from Prince Edward Island, both undergoing the treatment."


Procedure: Initial results are looking positive


After adding her name to a list to have the procedure done in Poland, Jill also contacted people in Buffalo as well as McMaster University in Hamilton, Ont., to try and find out more information about CCSVI.

The responses from Buffalo and Hamilton were that it was too early for human trials to be conducted.

However, in June Jill learned about a woman who had been to a clinic in San Oviv Holistic Spa in Mexico for the procedure.

Jill contacted the clinic right away and, after a brief follow-up, began the application process in Canada through Hospital Angeles in Tijuana.

Jill said the cost to have the procedure done in Mexico was similar to what she would have paid in Poland.

“I had talked to people about the doctors in Mexico and received high recommendations,” Jill said.

The process did not take very long and once she was accepted for the procedure Jill had picked a date to be in Mexico.

“To choose a date was extraordinary. To know that it was going to happen that early was very exciting,” Jill said.

Within three weeks, Jill was in Tijuana with her husband who slept in the hospital every night she was there.

Jill likened the whole process of being in the hospital in Mexico to giving birth.

“You know tomorrow that your life is going to change and be different. You have no idea what to expect. But you do know that tomorrow is a new day and the start of a new life,” Jill said.

Jill felt it was important for people to know that this is not a surgery but a procedure with a local anaesthetic.

Doctors perform a balloon angioplasty, which has been used for medical procedures for many years.

When the doctors went into her left internal jugular they found it to be 55 per cent blocked.

Jill said it was “wonderful to watch the faces of these magnificent men while they are working because they look like 10-year-olds watching a video game. They were doing their work and it was fascinating.”

The effect on Jill since the surgery has been amazing.

“It has helped me. When I was in the procedure room on the table you can’t do anything. When they were working on my jugular I felt warm right down my body to my feet and I could move my left foot in a way I couldn’t for a long time,” said Jill. “The improvements for me varied. Some were immediate and some are evolving. Normally I needed help to get out of bed but I didn’t after the surgery. My knees were bending and it was helping me with my walking. That was six hours later. I hadn’t bent my left leg and had it follow through since 2003.”

As for her future, Jill has some simple hopes in the short term.

“I am hoping that through physiotherapy and working at home I will be able to start walking more,” Jill said.

Currently, she practises walking more every day and looks forward to being able to visit people and go into shops that she has not been in for years.

On the Multiple Sclerosis Society of Canada website there is a great deal of information about CCVSI for people who are interested in learning more about the procedure.

Jill is hopeful there will be inroads made so people will not have to leave Canada to have the procedure done.

“The biggest holdup for this procedure in Canada is the research required to have the procedure done,” Jill said. “So without the research they are required to do, it will take two or three years before it can become available to the public. I think the benefits to the medical system and the lives to people warrants more financial dedication to doing it.”


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