Letter to the Editor,
It is not often I get mad enough to write about the inanity that encompasses our government and a so-called non-profit group called the MS Society. I suffer from a condition known as multiple sclerosis. Let it be known at this point that MS is not classified as a disease; it is merely a description of what is found in the body after an MRI (magnetic resonance imaging) scan.. My physical degeneration is due to chronic cerebral-spinal venous insufficiency (CCSVI).
MS causes the nerves in localized areas in the brain and spinal cord to lose their protective myelin sheaths; the body retaliates by increasing the blood supply to the specific area, and the resulting inflammation results in a lesion. These lesions can be healed, although they usually leave scarring; however if the attack is too strong, the myelin sheath will eventually disappear and the nerve cluster will die. An MRI is able to reveal these lesions, and lend some estimation as to their age and progression.
The historical theory was that MS is an autoimmune disease, due to the nature of the body’s attack on the myelin sheath. No one was faster to jump on this ship than the major drug companies, who, with the assistance of the MS Society, have been pumping MS patients full of poisonous drugs that have done, for the lack of a better term, squat. And in the sixty years that the MS Society has been claiming this battle as their own, they have accomplished about as much.
And so, the quiet community of MS patients has suffered silently without an active voice. We had no cause, no treatment and no cure. Our doctors told us to be patient; a cure was just on the horizon. Well, in 2009, Dr. Paolo Zamboni emerged as a lone figure in that horizon.
He discovered that, in many MS patients, the veins that act as the main drainage pathways for blood flowing from the brain back to the heart are narrowed and, in some cases, even blocked. These restricted passageways cause the blood to create new paths, and flow back up towards the brain, also known as “blood reflux”. The poor venous drainage, when seen similarly in the lower body, can cause iron deposits that, in turn, cause inflammation. As iron deposits were noted in MS lesions long before this study, Dr. Zamboni and his team reasonably hypothesized that the iron deposits in the brain were behaving much in the same way that they did in the lower body; they were becoming inflamed. Dr. Zamboni did more than any other doctor has in the history of MS; he took it one step further. He treated his wife, who was diagnosed with MS, with a simple procedure called angioplasty, which is practiced worldwide as a day surgery. In the three years since her operation, his wife has yet to suffer another attack. In fact, in a study he conducted by performing this operation on 65 MS patients, 70% of these patients have not had another episode.. Not conclusive? Alright, well, 100% of the patients whose veins did not restenos (narrow) again have not experienced another episode.
Instantly the MS Society jumped all over this procedure, stressing how dangerous angioplasty was and people that suffer from MS should not pursue this. Shortly after that, the large pharmaceutical companies anticipated a 26% increase in MS drug profitability. It is well-known that the MS Society is made up of self-serving neurologists, who pay themselves huge salaries and also gladly accept payments from these drug companies to flog their products.
Malformed jugular and azygos veins, which are crucial to draining blood from the brain, have been linked to chromosome 6p21.32, which says that this is a congenital problem. No drug in the world will fix this.
Ms. Agluqqak met with the MS Society and the CIHR (Canadian Institute for Health Research) last August 28th. No minutes are to be found of this meeting. No vascular experts were to be found at this meeting. Both organizations are joined at the hip with drug companies. The outcome of this charade was the formation of seven studies, all headed by neurologists with not one vascular expert on board. The MS Society contributed 2.4 million dollars to set these studies up, less than what it spends on office supplies for one year. This time and money-wasting exercise is all about getting electricians to understand a plumber’s job, and to what end?
On Feb.8th of this year Dr. Kirsty Duncan, a Liberal MP for Etobicoke North, hosted a breakfast meeting in Ottawa with renowned Dr. Sandy McDonald, Dr.. David Hubbard and Dr. Mark Haake. Every federal MP and senator was invited to this meeting. To explain who these brilliant doctors are, Dr. McDonald studied with Dr. Zamboni, Dr. Hubbard is a neurologist who embraces the CCSVI procedure and runs a clinic in San Diego, and Dr. Mark Haake is an imaging specialist. I e-mailed my MP Tony Clement and Ms. Agluqqak to see if they were going to attend this meeting. Agluqqak’s office did not respond at all, and Tony Clement had previous commitments. As it was, 35 people showed up to this meeting. Hundreds of invitations were issued. Dr. Hubbard came out of this meeting saying, and I quote “Half of our patients in Southern California are coming from Canada. That’s just not right. Especially when it’s being prevented by a very small group of angry neurologists in Canada.”
There are 75,000 people in Canada with MS. We are all being denied this life-saving procedure in our own country with no explanation except that “studies” must be completed to establish that MS has a relationship with malformed veins, and that these studies will take 2 years to complete. Many of us will die before these studies are completed.
If I had any other condition than MS, I could get this simple day surgery in a city close by. It would cost $1500.00. But, I have to travel outside of my own country and pay at least $9000.00 out of my pocket to have the surgery. I had the scan on the veins in my neck and 3 out of 5 are not draining properly. Interventional radiologists in the United States are actually looking at this congenital defect as possibly being the cause of Alzheimer’s and Parkinson’s disease. What kind of ground are we losing by Agluqqak sticking her head in the sand? Canada used to be a leader in innovative medicine. Obviously our health system is being hijacked by ignorant politicians.
I have researched this condition for almost a year and a half. By no means am I an expert but I have learned a lot. I am disgusted to know the federal government and most provincial governments are opposed to MS sufferers receiving any relief from their declining health by having a simple inexpensive procedure. I know that the big pharmaceutical companies are turning their focus away from MS drugs to research on drugs that would help prevent restenosis of veins once they are opened up. They know an opportunity when they see it. The MS Society and the Canadian Institute for Health Research are dead in the water when it comes to vascular knowledge and Agluqqak had no right to ask their advice in the first place without also receiving input from the brilliant doctors mentioned above. She has forgotten that she is just our employee and in her position it is her duty to explore ALL aspects of any health issue.
As Albert Einstein quoted, “Great spirits have always encountered violent opposition from mediocre minds.” Need I say more.
Leslye Gower