IVCC/CCSVI, liens et articles de ce vendredi.

Publié le par Handi@dy

Barre google de traduction indispensable!

Je liquide d'abord les articles contre la CCSVI, ils ne tiennent pas la route, comme je l'ai expliqué hier, faits sans rigueur médicale, aucune valeur!

*l'assoce SEP américaine muette:

No answers

*Scott Stinson: Caution missing over unproven MS treatment

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Studies cast doubt on experimental MS treatment avec vidéo

Province must rethink stance on MS funding

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Placebo effect' a concern with controversial MS treatment: Experts

Wall affirms MS trialslink

*Tories implore NDP to fund MS treatment

Hi All :D

Just got off the phone with a friend from Niagara Falls..last night, Dr. Zamboni himself called her and gave her important news.

Anyone with "MS" now CCSVI should "demand" an mri, mrv on their brain and neck...when the CCSVI (blockages show in the veins) they, as in a vasular surgeon HAS to treat it..they are treating ccsv NOT "MS". So, ask your dr, for the mri to check for ccsvi NOT MS. OHIP HAS TO COvER IT....the neurologists aren't telling us this because they want to keep us in the dark. According to my source, Zamboni says to keep your appt for your procedure because if you need a stent the vascular surgeon will not place them...only the angioplasty BUT that is ONE step forward to A. saving a couple of thousand $'s and B. getting your angio done while waiting for a clinic to accept you.

Now, it will take a couple of months to get the mri but if you have to wait til the new year for a clinic, get a head start NOW and call your DR tomorrow. I am pretty close to my date but still calling just in case.

I find this news to be appalling on the part of the neuro's but not surprised...I am sooooooooooooo grateul to my friend knowing Dr. Zamboni...So, tomorrow hit the phones my friends...If your DR refuses? fire him/her and find one who will...I'm lucky as I know my gp will do thsi but too late for me,probably...but as said "just in case' I'm calling first thing tomorrow....

Hope this helps you..

peace light and love
Jayne x

*"I want to share this booklet with parents who have small children of 6-12 years. it helps explain MS"

 *Medical similarities between MS and M.E. Permission to re-post by the author, Jodi Bassett

*Caroline McNeill : Letter from Kevin Falcon

*Joint MS study to begin within weeks

*New Dundee woman seeking revolutionary treatment for MS
By Nancy Silcox
News
Aug 05, 2010
click here to expand....

   

April Morrissey was elated with the medical news coming out of Italy. Word had spread that Dr. Paolo Zamboni, an Italian vascular surgeon had uncovered a potential cause and effective treatment for multiple sclerosis (MS), shedding light on one of medical science’s most enduring mysteries. And with this joyous news, the New Dundee woman, one of an estimated 60,000 Canadians afflicted by MS, cautiously began to feel a glimmer of hope for her future.
The Internet buzzed that Dr. Zamboni’s research, carried out at the University of Ferrera in Italy, linked MS to Chronic Cerebrospinal Venous Insufficiency (CCSVI) a condition where veins in the neck, and leading to the spinal cord, have become obstructed.
Zamboni found that a simple balloon angioplasty could open these veins, improving blood flow and reducing MS symptoms.
Up until this point, medical science had yet to uncover a cause for MS, suggesting that it‘s the result of a malfunctioning immune system.
So far, an effective treatment has been elusive.
Morrisey learned hundreds of MS patients had since undergone the procedure in Italy, Poland and India. “Surely” she prayed, “they’ll be doing it here soon too.”
Little did she imagine that over a year after Zamboni’s findings were announced, the provincial and federal governments were still dragging their collective feet, calling for more studies, before treatment is offered to Canadians.
Morrissey, 39, had her first “attack” of MS at age 20 while she was studying at university.
“It started with numbness and tingling in my baby toe and baby finger. I felt no pain, but I was unusually fatigued,” she recalls.
Worried, she got herself to emergency at the local hospital. She was seen, diagnosed with “a virus” and sent home. The symptoms lasted approximately one week, then faded.
Her second attack occurred about a year later. Symptoms were similar to the first incident, but this time she had numbness on one side of her face and under one eye. The symptoms were worrisome enough for her mother, a nurse, to make an appointment for her daughter with the family physician.
He made a referral to a Toronto neurologist. A year passed between the second attack and the appointment. After another wait of several months for a MRI scan, April was formally diagnosed with multiple sclerosis.

Dealing with the Diagnosis

She remembers her reaction to the news: “Honestly, I was more concerned with my wedding that was coming up in a month or so than the diagnosis.” April credits the attitude of the Toronto neurologist with helping her deal positively with what might lie ahead.
“He told me that I had the ‘best’ kind of MS — if there is any ‘best’ in receiving such news. Mine was the mildest form of MS, called ‘remitting and relapsing.’ That means the symptoms come and go, and there was a chance that I might not even have any more attacks at all.”
The neurologist also advised Morrissey that women like her, in their 20s when they are diagnosed, seem to have a better prognosis than females diagnosed in their early teens, or men, diagnosed after 40.
Morrissey didn’t have another MS attack for two years. She had entered nursing training and was in her second year of school when the telltale symptoms returned.
“Numbness and tingling in my hands and feet, but this time I was also having severe pain and blurriness in one of my eyes.”
She also remembers “wicked headaches” as a spin off from the eye pain.
A visit to an ophthalmologist revealed optic neuritis, or inflammation of the optic nerve, a common MS symptom. This time she’d need to go on a course of the steroid Prednisone to bring the inflammation down. After a time on the drug, Morrissey’s condition improved and she could resume her nursing studies.  

Becoming Knowledgeable about Multiple Sclerosis

Coming to the stark realization that her MS was here to stay, Morrissey vowed to become pro-active and knowledgeable about the condition.
“I read everything I could on MS. And I started to take supplements, like vitamin D, fish oils and evening primrose oil, all which are said to help. I also watched my diet carefully, cutting way down on red meat and eliminating saturated fats. Exercise became part of my regular routine too.”
Two healthy pregnancies and two “good labours” followed, with Morrissey virtually symptom-free of MS. “Pregnancy seems to improve MS in many women,” she offers, “and both of mine put me into beautiful remissions.” But a year after the birth of Morrissey and her husband Kevin’s second child, Isaac, she had a full-blown MS attack. The usual numbness was this time followed by loss of mobility, temporary paralysis in one of her hands, and bone-numbing fatigue.
April was started on Rebif, a “disease-modifying” drug, touted to lessen the frequency and severity of attacks. Three times each week, Morrissey injects herself with Rebif and waits to feel sick.
“I hate the Rebif because it gives me flu-like symptoms after the injection,” she says. And while she does admit that her attacks have become less frequent on Rebif, she’s noticed that with each episode, it takes her longer to bounce back. “MS does permanent damage to your nerves,” April states. “You’ll never recover to the same degree of physical ability you had before the last attack.”

Looking Beyond the Mainstream

Frustrated with the attitude of the mainstream medical community towards MS, a community that she feels only treats her condition with prescriptions, Morrissey decided to investigate how alternative therapies would deal with the condition. She began to see Guelph physiotherapist Terry Moore at his Moore Muscle Therapy and Rehabilitation Clinic. The clinic had experience treating other MS patients.
For Morrissey, her Guelph visits soon produced a double benefit.
“I like my physiotherapist’s attitude. He helps me believe that there are steps I can take pro-actively, including specific exercises, to fight the MS.” She also met other MS patients there and was comforted by their fellowship. It was here that Morrissey first heard the news of Zamboni’s “Liberation Treatment.”

Zamboni’s Startling Findings


Dr. Paolo Zamboni, an Italian vascular surgeon had begun his investigation of MS after his wife, Elena was diagnosed with the condition. He read everything he found on the subject, and came across early sources that suggested that a build-up of iron in the body might be a factor in the development of MS. Zamboni pondered this information and reasoned that, if indeed MS was linked to an excess of iron, might this not be caused by blockages in the body’s “roadways”— its arteries or veins? Being a vascular surgeon, he was well aware of how such blockages around the heart are cleared — by the straight-forward medical procedure of coronary angioplasty.
Zamboni put his theory to the test by ordering a Doppler Ultrasound and MRI on Elena. He was astounded and elated by the results.
In several of her neck veins, including the jugular, there were significant blockages. Blood flow between Elena’s brain and body was clearly being restricted. More significantly and if the old “iron build-up” theory was accurate, the iron was surely causing damage in the myelin sheathing of the cerebral nerves…with MS being the result. 

Eliminating the Block

Zamboni scheduled immediate angioplasty surgery for Elena. A catheter was inserted in one of the blood vessels of her groin; the catheter promptly made its way up to the blockages in her neck. A small balloon was then inflated and the blockage was cleared. The results were immediate and dramatic. Elena had been “liberated” from MS. 
With this success, Zamboni began tests on other MS patients. He found that a staggering 90 per cent of them showed similar blockages as Elena had. The more severe the blockage; the more severe the MS.
Over a period of some weeks, angioplasties were performed on a total of 65 MS patient, all with venal blockage. All were eager to undergo the experimental procedure. As had been the case with Elena, the results were life-changing, with dramatic improvement of MS symptoms. Two years after the surgery, 73 per cent of the test patients remained MS-free. With just cause, Zamboni called his procedure “The Liberation Treatment.”

Immediate Reaction Round the World

An expected storm of reaction resulted from Dr. Zamboni’s research, much of it surfacing on Facebook, YouTube and other social networking sites.
MS patients worldwide began to beat a ready path to their physicians’ offices, demanding access to Zamboni’s treatment.
In Barrie, ON, Dr. Sandy McDonald, a vascular surgeon, was particularly interested in the Italian surgeon’s work, and travelled to Italy to study the procedure from him.
After returning to Barrie, McDonald opened up the Barrie Vascular Imaging Clinic (BVI) and invited MS patients, on referral from their family doctors to seek consultation. In the succeeding weeks, BVI staff also fielded thousands of telephone calls from MS patients themselves.
“They were heart-rending pleas for help from utterly distraught patients, parents and spouses,” McDonald says.
McDonald’s early statistics confirmed those of Dr. Zamboni. Over 90 per cent of patients diagnosed with MS had venal blockage in the neck or leading to the spinal cord. The first six of what Dr. McDonald hoped would be “an army” of MS sufferers undergoing “Liberation Treatment” were referred to the Barrie hospital for balloon angioplasty.
In McDonald’s May 11 address to the government Subcommittee on Neurological Disease of the Standing Committee on Health, he reported that after the procedure “all six MS patients have had significant improvement; four of them have seen dramatic improvement.”

The Ministry of Health Reacts

Shortly after McDonald’s appearance before the government committee, he received word from the Ministry of Health that the imaging procedure being done at BVI would no longer be covered under OHIP. McDonald was also advised that if BVI billed clients for the imaging, they would be shut down.
Hospital referrals that McDonald had made for angioplasty surgery were also cancelled. On the heels of this bad news, notice from the provincial health ministry advised that there would be no further CCSVI surgery for MS patients until government had given the matter “further study.”
In speaking by telephone to McDonald’s BVI Clinic last week, I was informed by staff that Dr. McDonald continues to book between 25 and 30 MS patients a week for venal scans as part of a double-blinded study for assessing CCSVI and its treatment. He is trying to put together a more extensive test group than preliminary trials first published by Paolo Zamboni.
“And he covers the entire costs out of his own pocket,” one employee revealed.
“Dr. McDonald just feels he just can’t cut off this hope for people.”
As of this month, angioplasty for MS patients with CCSVI remains illegal in Canada. Those whose condition has been verified by venal scan at BVI or other similar imaging clinic across the country have only two options. They can wait (indefinitely) for Canada to approve “The Liberation Treatment,” or they can go abroad for treatment.
Those with deep pockets are choosing the latter option, in droves.

Venal angioplasty for MS patients with CCSVI is available in various countries around the world, including India, Costa Rica, Israel, Mexico, Bulgaria and Poland. Zamboni is presently not doing surgery in Italy, but focusing on research instead.
Costs before travel and accommodation can run upwards of $10,000.
One MS patient who recently elected to travel outside Canada for treatment was Andrea White of Kitchener. White and eight other Ontarians flew to New Delhi, India for the venous angioplasty surgery at a private Indian hospital.
In an interview with the Waterloo Region Record in June, White said that almost immediately after the one-hour operation, she had regained feeling and warmth in her affected leg. Her mobility also improved greatly. White no longer needs pain medication.

April’s Hope

April Morrissey feels a mixture of happiness and frustration in reading such stories as White’s. “Anyone who has MS knows what we all go through on a daily basis with it, so I’m happy when I hear that someone is much better. But not all of us are in a financial position to cover the costs of a trip to India or Poland.”
April is on the waiting list for venal imaging and possible angioplasty in Albany, New York, one of a handful of American clinics and hospitals performing the procedure. There is a wait list. April has received confirmation that she will be booked for the procedure during the first quarter of 2011.
“That’s not so long,” she says optimistically, “but it’s so frustrating and wrong that people like me need to go outside Canada for treatment that has been proven effective elsewhere.” 
April speaks for 60,000 Canadians afflicted by MS when she asks that pressure be put on the Canadian governments, both federal and provincial to step up their approval of “The Liberation Treatment.” 
“For me, my MS is still not severe, but for others it’s urgent.”

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Premiers meet as protesters gather outside

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Sask. MS trials to go ahead despite new research

Last Updated: Wednesday, August 4, 2010 | 2:37 PM CST Comments77Recommend21

Saskatchewan Premier Brad Wall says more research is needed into the liberation treatment for multiple sclerosis.Saskatchewan Premier Brad Wall says more research is needed into the liberation treatment for multiple sclerosis. (CBC file photo)

Saskatchewan Premier Brad Wall says new research calling into question the effectiveness of an experimental treatment for multiple sclerosis won't stop the province from helping to fund clinical trials of the so-called liberation treatment.

"There's been a lot of skepticism … and there still is and even researchers that are already looking at this issue in the province are very realistic," he said.

"They're talking about it looks like the anecdotal information is about 50-50, some significant improvement and no improvement. So I think we knew about that going into it. We know about the skepticism."

The treatment is based on an unproven theory — put forward by Italian doctor Paolo Zamboni — that blocked veins in the neck or spinal cord are to blame for MS.

However, new research released this week in Annals of Neurology, a journal published on behalf of the American Neurological Association, suggests not all MS patients have constricted neck veins.

"Other groups found a much smaller number seem to have [constricted neck veins], and that lots of normals appear to have it, and also people with other neurological disease had it," said Dr. Jock Murray, a professor emeritus from Dalhousie University in Halifax and the founder of the school's MS research unit.

"So the question is whether it is a normal variation, and what the relation with MS is, because it doesn't appear to be very specific."

More research needed, Wall says

But that skepticism isn't dampening the possibility of Saskatchewan paying for clinical trials.

The province has the highest rate of multiple sclerosis among provinces, with an estimated 3,500 patients.

Because the liberation treatment is not available in Canada, patients are flocking to clinics in Poland, Bulgaria and India for the surgery, which opens blocked veins.

Wall said he knows there are doubts about the procedure, and that's why more research is needed.

"Shouldn't we answer all the questions, and if the research community … says, 'You know what, I think we're ready to take the next step and do some clinical trials and answer some of these questions,' shouldn't we be responding to that with the high incidence of MS we have?" he asked.

"I think the answer is yes, we should be funding those trials on cue only from the research community."

Research proposals into liberation treatment are still being worked on, and it could be early next year before the province looks at all of them.

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People with MS call on provinces to fund liberation treatment

Manitobans rallied on Thursday to call on provincial governments to fund the liberation treatment.

Manitobans rallied on Thursday to call on provincial governments to fund the liberation treatment.

Updated: Thu Aug. 05 2010 19:19:51

ctvwinnipeg.ca

Dozens of people with multiple sclerosis gathered outside a meeting of Canada's premiers to urge them to follow Saskatchewan's lead in funding trials of a controversial treatment.

"I want to do it. I can't believe that I have to go to Mexico or Egypt…why can't I get it done here?" asked Pat Benoit, who has MS.

The so-called liberation treatment was developed by Italian doctor Paolo Zamboni.

His theory, which has not yet been proven and is not currently considered a cure, is that blocked veins in the neck or spinal cord cause symptoms of MS and that by clearing the blockages, patients can become symptom free.

A handful of countries such as India and Mexico offer the treatment, but it comes with a price tag of about $7,000 to $10,000.

The province has said it wants to wait until more research has been done before it offers the treatment in Manitoba. Recently, studies in Germany and Sweden conducted ultrasounds on the veins of a small group of subjects with and without MS and found no difference between the two groups' veins.

Duncan Thornton is a Manitoban who travelled to Poland to receive the liberation treatment because it wasn't available in Canada. He said he's had more energy since the treatment than in the previous 20 years.

Thornton wants to see the province act quickly to offer the treatment.

"Every moment you wait there's going to be more people in wheelchairs there's more people who are going to go blind more people who are going to die," said Thornton.

In July, Saskatchewan said it will begin offering help funding clinical trials on the liberation treatment.

Manitoba Premier Greg Selinger, meanwhile, said more research is needed before he gives approval for the treatment or trials in Manitoba.

"It's simply a matter of doing this in a way that it won't be negative for people," said Selinger.

Pat Benoit, however, said she'll keep pushing the province to offer the treatment and said even a small improvement in her quality of life would mean a great deal.

- with a report from CTV's Karen Rocznik

* Saskatchewan premier tries to bolster support for trials of MS surgery

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Rally held to support Saskatchewan government's plan to fund controversial MS therapy

Global MS prevalance data

 




Commenter cet article

tiot le chti et bunny le chti 06/08/2010 09:28



salut


je te souhaite un bon week end



Handi@dy 06/08/2010 22:51



Bon week end à toi aussi Tiot! :0010: