IVCC/CCSVI, articles et liens de ce lundi.

Publié le par Handi@dy

Barre google de traduction indispensable.

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Gluten-free diet in relapsing–remitting multiple sclerosis

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Small victories for Oshawa woman after controversial MS therapy

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A Westlock family is raising money to send three of their family members out of the country for the controversial Liberation Treatment.

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 Manitoba saves $500K for MS trials

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par CCSVI in MS Toronto, lundi 6 septembre 2010, à 06:07

 

CANADA, WHY?

by Lorin Powell - Sunday September 5 2010

 

Dear Canada,

I do not know how I can write about this topic when I am so emotionally drained from how our health care system and the government is failing  people that have been  labelled with the symptom  MS. Our government, the Multiple Sclerosis Society of Canada (MSSC) and the Canadian Institutes of Health Research (CIHR) are ignoring the fact that a simple venoplasty procedure that they are withholding corrects venous abnormalities that reduce the symptoms known as Multiple Sclerosis. Canadians are being forced to travel abroad for this possible life saving procedure. These three agencies could be helping to reduce unneeded suffering and potential death due to the complications of the symptom MS.

 

On September the 1st 2010 a young man from Ontario of only 34 years of age passed away due to complications from MS. This young man, a husband and a father of a young child was denied hope for a chance at life with his family. He was on the wait list for a venoplasty procedure in Albany New York he never made it. Why would our government deny this procedure when it could have prevented a five year old child from growing up with out a dad?  

 

Health minister Leona Aglukkaq, Dr. Alain Beaudet and Yves Savoie  I am holding you personally responsible for this disgusting lack of human compassion. You have caused an overwhelming degree of anger and frustration as to how you let fellow human beings suffer this way. I really hope that this 5 year old child never finds out that his government and the MSSC could have stepped in and possibly saved his dad. A child should never have to feel the hate and contempt that the families and sufferers of the symptom MS have endured.

 

This power struggle as to who has the rights to let MS sufferers receive a simple procedure to correct blood flow must stop. The venoplasty procedure should have been made available on a compassionate basis. I know you are aware of the woman from Barrie Ontario who was flown to New York on a private plane for the procedure. This woman has made remarkable improvements in her quality of life. If a Good Samaritan did not step up and help, I feel she might not be here today.

 

Dr. Alain Beaudet and Yves Savoie I do not know how you can sleep at night knowing you are holding so many lives in your hands. Do you look in the mirror before you go to bed and say to yourselves I am doing the right thing 10 x over? Now, does that help you sleep? Ms. Leona Aglukkaq, how can you justify the CIHR and the MSSC unjust and bias decision regarding the treatment to correct CCSVI? The members of CIHR and the MSSC have everything to lose if the treatment of CCSVI is acted upon. What if this simple procedure halted the symptom MS? Do you think, Ms. Leona Aglukkaq, someone’s funding might dry up?

 

A neutral party needs to be formed. Individuals should be selected that have nothing to lose or gain from their decisions; individuals who are not politically or finically motivated; completely neutral. The CIHR needs to be investigated. How can a group that approves funding for each other in the research of MS be trusted to investigate CCSVI? Chronic cerebro-spinal venous insufficiency is a vascular disorder that needs to be investigated by interventional radiologists, not neurologists.

 

Lorin Powell

 

Nanaimo B.C"

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 Province funds MS clinic, future ‘liberation’ trials

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Why no funding for MS?

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Surgery gave her life back

Christine Wood Photo


Kate Cardinall and her husband Robin Redfern were at Sunnycrest Mall last Saturday telling everyone about the simple surgery she recently had done in Poland that cured her MS.
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More Info from AZ Heart and Lifegaurd

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Key to Blood-Brain Barrier Opens Way for Treating Alzheimer’s and Stroke

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****EUROMEDIC - CCSVI Treatment Safety Study

par CCSVI in MS Toronto, jeudi 14 octobre 2010, à 21:37

Safety and complications related to endovascular treatment for chronic cerebrospinal venous insufficiency in multiple sclerosis patients. M. Simka, T. Ludyga, M. Kazibudzki, M. Hartel, M. Swierad, J. Piegza, P. Latacz, L. Sedlak, M. Tochowicz

 

EUROMEDIC Specialist Clinics (Katowice, PL); Magnetic Resonance Imaging Department VOXEL (Zabrze, PL)

 

Purpose:

The aim of this report is to assess the safety of endovascular treatment for chronic cerebrospinal venous insufficiency (CCSVI). Although balloon angioplasty and stenting in other vascular territories are already accepted and seem to be safe procedures, there are currently no data on such treatments of a large group of patients with compromised venous outflow in the internal jugular (IJV) and/or the azygous vein (AV).

 

Methods:

A total of 587 endovascular procedures: 414 balloon angioplasties and 173 stent implantations were performed during 361 interventions in 347 CCSVI patients with associated multiple sclerosis.

 

Results:

There were only few, rather minor and occasional complications or technical problems related to the procedures. These included: (i) life threatening complications: death – 0, major hemorrhage – 0; cerebral stroke – 0; stent migration – 0; (ii) major complications: early stent thrombosis – 2 (1.2%) (all two occlusions occurred after the stenting for severely hypoplastic internal jugular vein; there were no likely clinical consequences due to these thrombotic events because the veins were not patent before the procedures, and the hemodynamics did not worsen despite the unsuccessful stenting); postoperative false aneurysm in the groin – 2 (0.6%) (successfully treated with thrombin injection); surgical procedure (opening of femoral vein) to remove angioplastic balloon – 1 (0.3%); injury to the nerves – 0; (iii) minor complications: transient cardiac arrhythmia – 2 (0.6%); minor bleeding from the groin – 2 (0.6%); minor gastrointestinal bleeding – 1 (0.3%); postprocedural lymphatic cyst in the groin – 1 (0.3%); problems with the removal of angioplastic balloon or delivery system – 5 (0.9%); unsuccessful catheterization of the stenosed internal jugular vein – 4 (0.7%).

 

Conclusion:

Regardless of the actual impact of the endovascular treatments for venous pathology on the clinical course of multiple sclerosis, which warrants more clinical studies and long term followups, these procedures appeared to be safe and well tolerated by the patients.

 

 

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Prescription charges to go in Scotland

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ECTRIMS: Low Vitamin D Increases Risk of Pediatric MS

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par CCSVI in MS Toronto, lundi 18 octobre 2010, à 06:41

According to the MS Society of Canada, Canadians have one of the highest rate of multiple sclerosis in the world. MS is the most common neurological disease affecting young adults in Canada. Every day, three more people in Canada are diagnosed with MS. But more importantly, they state MS is not a fatal disease for the vast majority of people with MS. I copied this from the MS Society website.

 

I would like to introduce myself. My name is Marcel and I am one of the rare chosen few with a fatal form of this disease. I shouldn't be alive right now and if I had followed conventional medicine and the advice of the people I should be able to trust, I would be dead.

 

I have been diagnosed with the rarest form of MS known as Progressive Relapsing which affects less than 5% of all MS patients. This form of MS is not treated by conventional medicine as little research has been done, sadly because the patients die before any conclusive proof can be made on if a treatment will work or not. The estimated time line from onset to death is dependant on the rate of progression, but usually ranges within 5 to 10 years. Unfortunately, I also suffer from a variant of MS known as Marburg Syndrome and me being able to tell you this is also very remarkable as this is usually diagnosed after death. This little variant takes my prognosis down to less than 5 years from onset. I am officially on my last year and literally at death's door.

 

I have only had MS for 3 years now but I have learned some very valuable lessons. Most importantly, I learned that doctors lie. My initial decline was so rapid that it was thought I had ALS, except for the notable relapses. I was sent to my first so-called MS Specialist from the Halifax MS Clinic. Dr. Alex MacDougall was over an hour late for my appointment then constantly checked his watch while we were there. He had me do a few small neurological tests which I failed, to only sit me down and tell me I couldn't have MS because MS does not cause pain and I am not a female. We were stunned as we were shown the door.

 

I had no choice but to start researching harder to find out what was wrong with me and to have it proven. After successfully forcing the painful removal of a spinal fluid sample, I finally had a confirmed diagnosis and was sent again to an MS Specialist where I met Dr. Richard Leckey who officially confirmed that I had Progressive Relapsing Multiple Sclerosis in Aug. 2009. Because I had done my homework on neurological disorders, I was very surprised to have this doctor tell me he would start me in the New Year with very high doses of interferon’s. When I asked why when they have proven to be ineffective for my condition, his response was “false hope was better than no hope”. Fortunately I opted for the medicine not discussed.

 

With an official diagnosis I was able to apply for and receive a Federal Exemption for Medical Marijuana. This alone was paramount to my survival. Early on cannabis proved to work more effectively than any of the medications that were being prescribed. By legally changing to a high dose of cannabis I was actually able to safely and slowly be taken off 27 pills per day while reducing the pain and spasticity that was restricting my mobility. As much help as it has been, it has not been the cure. My disease has continued to progress.

 

My condition has now advanced to a life of constant pain with the only thing keeping me alive is also preventing me from being treated outside of our country. Unlike most MS sufferers, mine is attacking my internal organs. My small intestine is constantly being constricted due to nerve damage brought on by a blood flow disruption in my brain. Forcing food or water into somewhere that doesn't want to be opened up is beyond any pain you can ever imagine. At this point in my life, death is more appealing than a big meal. No matter how bad I would love to have that food, it won't happen. 

 

I start my day off by spitting out pieces of teeth that have broken off in the middle of the night from seizures. This hurts as I always had nice teeth at great expense. Now I have a mouth full of jagged edges and no way to ever be able to pay for the dental work I need. Then I try to figure out which body parts work and which ones don't. I then spend the entire day trying to find reasons to not commit suicide like so many others with my condition. People with my condition have little in the form of options. We can spend about $20,000 to go to a company like Dignitas that offers assisted suicide for our condition, we can be prescribed very high doses of narcotics in the hopes that it will expedite our deaths, or we can be ignored and let die in excruciating pain. The only constant outcome with these options is death. I have no choice but to accept that I am going to die. I just can't accept the reason for it.

 

This past summer I drafted and sent a plea to the Federal Minister of Health as well as copied it to every Provincial Health Minister to request a compassionate intervention to allow me to have a simple procedure that is performed every day in this country. Other than a reply from the Health Minister in Quebec stating it will get all the attention it deserves, it has been ignored. More importantly, the response from Quebec proved that at least one Health Minister was aware of it during the Health Ministers meeting in September.

 

That meeting to discuss the CCSVI theory and treatment was an all out farce. If the Health Ministers actually believe the bullshit they were fed, they should be thrown out of office for incompetence. The committee formed to investigate the theory actually blocked and prevented anyone from speaking who actually would know anything about the procedure. Who were the experts they used? The wonderful doctors and pharmaceutical company representatives who stand to lose their jobs if the theory is proven.

 

The current crop of MS patients worldwide is worth an estimated $1 trillion over the next 20 years just in pharmaceutical products. The current average annual cost per patient in Canada with MS including diagnostic tests, doctors’ visits and medication is in excess of $60,000. The disease modifying drugs they give us costs between $30-50,000 per year and they have never been proven to be more than 8% effective. Canada has over 75,000 patients with approximately 3000 in Nova Scotia alone. We as taxpayers are paying for this.

 

Pharmaceutical companies are constantly being charged and paying fines for unethical practices by offering incentives to doctors for prescribing their medications. Their industry calls them perks while the rest of the world calls them as they are “kickbacks”. This is no secret. People refuse to discuss it even if they know it is true because they are afraid they may upset a doctor or more so, they have a hard time believing the person responsible to keep them healthy is actually profiting off their misery. That is exactly what is happening right now world wide with every MS patient. Treatment is being denied because of greed.

 

My province's MS Clinic is supposed to take care of 3000 MS patients with less than half a dozen doctors and are only open for appointments 1 day per month. My first and last visit to the clinic was almost a year ago. I declined the interferon’s as I had proven that the cannabis was working better. I was told to come back in a year if I was still alive to see if there might be any hope. Because there now might be hope, my neurologist refuses to see me. Not only will he not see me, he is also refusing to see any of his patients who have had or are considering the treatment. What Dr. Leckey and the rest of the doctors at the clinic can't seem to realize is that their patients actually talk to each other. In all seriousness, I truly am surprised that no one has taken a more drastic approach with one of these liars. Yet.

 

Most people have a hard time comprehending that a “Doctor” would not have a patient's best interest at heart. Most also don't understand that a doctor can NOT be a disease expert unless he has the disease. These so-called specialists became specialists because they read some textbooks written by a doctor who interpreted what his patients told him. The ONLY MS Specialist is the person living or in my case dying with the disease. A neurologist can not tell you how MS feels physically or what it will do emotionally. His answer is for you to take another drug. And why not? He is obviously getting a cut for every prescription and his clinic gets to be funded with clinical trials for drugs we can't afford that at best might have an 8% success rate.

 

Currently the worst profession in the world is to be a Neurologist specializing in MS. Their entire livelihood which pays for their vacations and comfortable way of life is under threat. Patients tired of being lied to are digging up the research the neurologists and drug companies are trying to keep hidden. Little things like how Dr. Jock Murray, considered to be the countries leading expert in MS, also acting as an adviser to multiple pharmaceutical companies secured millions in funding for clinical trials also advises the MS Society on where they should spend our money. I say “our money”, because as patients, we are who that money is supposed to be helping not him and his lying colleagues.

 

Of course for the many who think that doctors and pharmaceutical companies are here to help should do a little self educating. I suggest starting with looking up all of the ingredients in a 'safe' product like Ibuprofen. This is considered to be a “core” drug meaning it is a necessity for any medical organization. A few quick searches will quickly prove that for the most part, Ibuprofen is a commercial fungicide with 2 known carcinogens and one really disgusting compound that you can find for yourself. Your doctor will be the first one to tell you to take it.

 

That is of course just the tip of the iceberg of what you will find. You can find admissions from pharmaceutical employees admitting that vaccinations have had live cancer viruses in them. No pharmaceutical company has ever cured a disease. This would be the poorest business practice imaginable. Pharmaceutical companies are in the business of disease management with one goal in mind. Make the most amount of money regardless the risk to patients’ lives. They have been doing their business well.

 

The doctors who do not speak out against other doctors like this do so out of fear. Fear that they may be looked down upon by their colleagues. Doctors also fear bringing forth what might be considered anecdotal evidence no matter how compelling it may be for this same reason. I now know for a fact that a doctor would rather let his patient die than admit he was wrong. A neurologist or any Neurological Society for that matter is not a God, yet this is how they are being treated, while their colleagues are secretly laughing behind their backs for taking such losing stance. It is just too bad that the Doctors who know what is happening lack the intestinal fortitude to stand up and help us. 

 

The argument that the cost might be high is a political tactic to appease greedy doctors by a corrupt system. I would gladly pay to have the treatment in Canada, but the Health Ministers refuse this option. Again, because the doctors and pharmaceutical companies stand to lose so much. Our current administration has demonstrated time and again that it is more interested in catering to the corporate agenda while letting the people suffer. That is called a Crime Against Humanity and is the number one reason why Canada did not get a seat on the UN Security Council. It was never to keep Canada out, just to keep the current administration from getting in. We as patients will now start to petition and apply to have Canada removed from the UN for the same reasoning. Letting your people die for money is as inhumane as you can get.

 

Currently in Canada we have a number of MS patients who have been treated and are actually seeing an improvement to their quality of life. These are the people who are now forming charitable groups to collect funding to save patients like me. In Ontario a group called Angioplasty For All is now starting a lawsuit to expedite treatment. This could be dragged out in the courts for years at an estimated $10,000 per month in legal costs. Yet tomorrow... this country will likely have another MS patient die because their neurologist refuses to let them have a treatment to live.

 

Patients are learning and teaching others. They are learning so much more than where to go to be treated and how. They are also learning things like the Criminal Code of Canada and the definition of murder in Section 239 and how this is exactly what the doctors and the Health Ministers are doing. But more frightening are the ones who know The Charter of Rights protects Canadians who are defending themselves with whatever means when their lives are at stake. This of course is reinforced with Section 24 of the Criminal Code.

 

My doctor was actually told by the Radiology Department in Halifax, they can do the treatment... if the referral comes from a Neurologist. Because of our current greedy administration and the corrupt doctors of Neurology, people like me who pay their salaries have to die so they can keep making more while many more suffer. Therefore, a Neurologist who blocks a patient from recovery is in fact attempting murder in order to profit.

 

I could try to fight for an experimental treatment like Stem Cell Replacement, but logically it makes no sense to ask for a $100,000 treatment that has shown very small limited success compared to a $2000 treatment safely preformed everyday in Canada that is proving to have astounding results, whether the neurologists admit it or not.

 

Every week there are people leaving this country who have begged, borrowed and mortgaged everything they own to get a chance for a better quality of life. We have patients actually selling their medication illegally to help pay for travel and procedures. For the ones not paying attention in high school history class, this is what happens just before the revolt.

 

We as patients are not asking for anything extraordinary. Anyone with an understanding of junior high school level science can understand this theory. Multiple Sclerosis is thought to be an auto immune disorder where the body's immune system attacks healthy tissue insulating nerves. The theory proven by blocked blood flow exiting the brain, states that the trapped blood leaves iron deposits behind that is the cause of the immune system attacking the tissue. Very simple to understand, but not very supportable without evidence to prove it. The evidence does exist and is evident on MRI's.

 

Magnetic resonance imaging shows an MS patient as having white spots showing up on digital scans on brain matter. These are called lesions or scars. The only thing that will show up as a white spot would be a ferrous substance as the device works by using a rotating magnetic field. Therefore common logic would show that the lesion in the MRI is the iron deposit and not a scar. The scar would be found under the lesion.

 

If you can stop the build up of iron by correcting the blockage to the veins, then over time, the body will repair itself. This will take time, but my friends and I are also proving that this recovery can be expedited as well with the use of cannabis. Health Canada approved cannabis for MS patients not because the patients said it worked, but because they proved it. The benefits of cannabis are being kept suppressed for the same reason I am supposed to die. Greed. For MS patients, cannabis provides relief from pain, spasticity, tremors, depression and aids in rest and relaxation. It also makes their eyes red. The reason it makes their eyes red is due to the fact that cannabis is a vasodilator. The red eyes come from VEINS opening up to allow blood flow. This effect is basically what is keeping me and people like me alive.

 

Not surprisingly, this corruption is not only limited to MS patients. In 1975, the scientific community proved that cannabis cured cancer. This was suppressed by the government in order to further corporate greed. Since that time, the Canadian Cancer Society of Canada has collected over a half $ billion just from the Terry Fox Run alone. They still maintain there is NO cure for cancer and anyone saying otherwise is fraudulent. Their greed driven agenda, now has them basically calling the scientists paid for by a government investigation, a bunch of liars. The only reason for this is that cannabis is a safe and effective cure for diseases like cancer, diabetes and many more, but has no value to a pharmaceutical company as it is a plant that can not be patented, therefore it is worthless. But more than that, it is damaging to their profits.

 

I hoped I would never have to go public with this. Now besides living with the fear of being one day closer to death, I also have to worry about the criminal element due to the stupidity of our government keeping the only safe medicine illegal, as well as worry about an overzealous legal system with individuals having a personal mandate against medical cannabis patients legal or not. The only reason I am coming forward is ... I'm not afraid. I am a sworn peace officer and I am also an ordained minister. But more importantly, I will be dead in less than a year. While I am alive, I can and will use whatever means needed to preserve life. I also completely understand the important need and the mandate for organizations like 3CPO protecting patients in Canada. 

 

By now you are thinking why I should bother, as most people would have checked out long before now. I made a promise to a nine year old girl and her mother that I would not quit. I am not doing this for me; I have no bucket list and have done more than most could ever dream of doing. I am doing this so that others can live and not have to suffer in the agony I have endured. It rips me apart inside to think that our doctors and Health Minister could do this to us, but it hurts even more to know how many others are suffering.

 

As for our Heath Minister and her lack of response, I have nothing but contempt, both as a politician and as a human. I am sure Hell has a special place waiting just for her. But knowing that she is a mother, I am sure her compassionate side would come out if it were one of her own. Or would she secretly ship him off for treatment like the executives of the MS Society are doing? Yes, that's right, the people who said we couldn't have the treatment are also secretly getting it done, yet maintaining that it isn't safe.

 

I would gladly pay the estimated cost of $2000 if our health care system can't see the savings of $60,000 per year. Very, very stupid of them, but I would still pay it. But to be denied a chance regardless is still wrong. Leaving the country for me means stopping the only thing proving to keep me alive and possibly killing me if I stop. Staying means I die slower.

 

My prognosis of six to nine months is based on death by malnutrition as I am currently losing at the rate of 10 lbs per month. Luckily, I started out fat. Unfortunately, every relapse shortens that time frame with the chance that one will be the last. My relapses start with the inability to swallow anything including my medication and only get worse from there. During a major relapse death will be a result of dehydration or respiratory failure within four to five days.

 

I have no life so to speak. I walk when I can, but for the most part spend my life in bed in a bubble to avoid the stress that affects us most. I have been treated as an outcast and called a pothead by friends and family for trying to stay alive. While they are all adding to the stress that is killing me. I wake up in pain and I go to sleep in pain. When I dream now, it is also in pain. 

 

People who meet me have a hard time understanding how I can be so stoic. I have no choice. I can't show emotion. Lily and Chrissy shed tears every day because, no matter how hard I try, I can't hide the pain all the time, and every drop of those tears rips a little more out of me, but I continue for them. 

 

Some wonderful people who I will be forever endeared to have taken it upon themselves to try to help save my life. These aren't doctors, these are patients. They have been pleading with media and politicians and doctors. They have even started fundraising at http://funds.gofundme.com/ppis in hopes that they can find a doctor and location meeting a very hard to meet criteria. But that money can also be used to have it done in Canada if one was allowed.

 

Because I do live in that bubble to protect me, please respect my request to have any media contact go through Yvonne at savemarcelnow@yahoo.com 

 

It hurts me that the country I swore to protect is also letting me die unjustly, but one thing years of combat training did teach me was to never go down without a fight. The neurologist's have started a war they can not win. It has to end now before this escalates further and more die needlessly.

 

Marcel Gignac

 

http://www.facebook.com/marcel.gignac

 

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