This is the letter I sent to all Health Ministers, Premiers, College of Physicians and Surgeons, and MS societies across the country
Honourable Leona Aglukkaq
Minister of Health
REF: MS: Multiple Sclerosis
CCSVI: Chronic Cerebro Spinal Venous Insufficiency
Dear Ms. Aglukkaq,
Would you madam or someone PLEASE take the time and explain to me WHY so many people I know who have had the procedure for CCSVI A VASCULAR DISEASE, (A disease that the International Union of Phlebology felt they had enough proof and had no hesitation in letting the world know that CCSVI is DEFINITLY a VASCULAR DISEASE) So many of these people have had their symptoms disappear or greatly improved, even to getting out of wheelchairs, and do not have to take any MS drugs, and when they have MRI’s they find that those white Myelin scars that the neurologists base a lot of their theory on disappear because they are dangerous iron deposits.
WHAT IS LEFT OF MS?
DID THEY EVER HAVE MS? HAVE THEY BEEN MISDIAGNOSED?
Why is it that CCSVI is a vascular disease and yet no one with or may have CCSVI can see a Vascular surgeon or an Interventional Radiologists? Please do not insult my integrity by saying that our Canadian doctors do not know enough about this disease. We all know that the College of Physicians and Surgeons sent a letter out to these doctors threatening them with their licenses being revoked if they say anything or see anyone about CCSVI, this would be a very serious situation for any of these doctors. We are talking about the expertise in vascular diseases, and then all GP’s were sent a letter telling them that people with MS may not be offered the services of physiotherapists, Doppler ultrasounds, or MRI’s if they have anything to do with CCSVI.
We do not believe this had anything to do with protecting people with MS but it was an action to protect the MS neurologists.
By this summer, 20, 000 people would have had this procedure, I have been witness to this procedure and it’s results. It was 1868 that Jean-Martin Charcot a neurologists said MS was an autoimmune disease. It is now 2011 and that still has not been proven, and the question neurologists still ask, “ What is MS?”
HOW CAN YOU LET the neurologists take over everything to do with CCSVI a VASCULAR DISEASE! IT IS TIME PEOPLE WITH MS/CCSVI WERE GIVEN THE CHOICE OF HOW THEY WANT TO BE TREATED.
Dr. Zamboni say’s that the neurologists will not accept the results of thousands of people
Who have had the procedure and will only be satisfied with clinical trials that will take years to complete. Canadian scientist insist they will not bow to public pressure, we are not asking them too we are just asking them to do it another way, along side people having the procedure done. We have been told by many of the vascular experts that there is no way you can get correct answers without doing the procedure.
I ASK AGAIN WHY DO THE NEUROLOGISTS HAVE THE RIGHT TO ASK ANYTHING! When MS as an autoimmune disease has never been proven, and CCSVI is a VASCULAR DISEASE which the neurologists have been told for years that MS has or is a vascular disease and they chose to ignore all of it,
THEY ARE NOT THE EXPERTS. PEOPLE MAY HAVE BEEN MISDIAGNOSED.
To ignore what is going on with all these brave wonderful people with MS/CCSVI is criminal, of course we need research but you were all told by the vascular experts that this can be done along side performing the procedure. The seven research studies that are taking place and you say we must be patient are already irrelevant and doctors doing the procedure can give you the answers you need. WHY SHOULD THESE PEOPLE WAIT 7-10 YEARS to get their lives back, just to satisfy the neurologists? Please do not give me that line about you must wait for the science, the procedure is experimental, dangerous, when you know it takes a Vascular Surgeon or an Interventional Radiologists when shown the new technique to unblock the jugular and azygos veins, two minutes to understand what has to be done, our doctors are as good as any in the world. Believe me, this IS a very simple safe procedure.
People with CCSVI a VASCULAR DISEASE have every right to see a vascular surgeon and an Interventional Radiologist. They have every right to say
“WE WANT OUR LIVES BACK”
There are teams ready to go but you keep ignoring them, Dr. Sandy MacDonald’s team in Barrie Ontario is one of them. It is criminal that the newly diagnosed are not given the choice how they should be treated
Finally I as a Canadian citizen do not want to hear or see any of the people who have had the procedure for CCSVI denied after care whether it be blood thinners or blood clots. No one needs to die because of lack of care from our own medical system. People go abroad for all kinds of procedures and surgery and only MS/CCSVI patients are denied care on their return WHY? They should have the right of receiving physiotherapy, Doppler ultrasounds, MRI’s, Hyperbaric Oxygen Therapy, and anything else they might need.
BUT MOST OF ALL IT IS THEIR RIGHT TO ASK TO SEE ANY DOCTOR THAT RELATES TO THEIR DISEASE, JUST LIKE ANY OTHER PERSON IN CANADA.
This last fourteen months I have been witness to so much joy-watching people who were told they have MS get their lives back. My daughter was one of them; her progression got worse with drugs and still progressed without drugs, so she traveled thousands of miles and paid $10.000 like many others for something
THAT SHOULD HAVE BEEN HER RIGHT TO HAVE DONE IN CANADA
TO HAVE HER BLOCKED VEINS OPENED
DRUGS ARE NOT THE ANSWER FOR EVERYONE
WHAT IS MS ANYMORE?
HAVE THOUSANDS OF PEOPLE BEEN MISDIAGNOSED?