(the letter I wrote for my MP)
I thought it was appropriate and necessary for me to post a personal note and perspective on the CCSVI treatment for MS. I wanted you to understand my personal situation and how decisions in the Canadian Parliament will be impacting me directly.
As a point of reference, I took time to read through the entire debate that was held in the Canadian House of Commons on June 14 on the topic of Multiple Sclerosis. It read like an unskilled preacher that had two opposing points and repeated them over and over again and then finally ended without a decision. However, I read every word. My sympathies as you sit in on any of these debates.
I have Secondary Progressive MS and have lived with the disease for twenty seven years. I have been under the care of a physician and neurologist for the past thirteen years. To this day, the only treatment that I have received is medication to relieve pain. Every two weeks, $300 is spent at the Pharmacist. I take high levels of Gabapentin and Methadone. Other than masking my pain, there is no treatment available for Secondary Progressive MS. Neurologists have nothing.
During the past couple years I began to experience new symptoms. The function of two of my vital organs has begun to decrease along with a memory decline. I was sent to a memory specialist six months ago (January 2010) from which I received the diagnosis of Mild Cognitive Impairment.
My GP was in process of diagnosing me with Vascular Dementia and scheduled me with a multiplicity of tests, primarily to see if hardening of the arteries was the cause. The tests to prove his diagnosis all came back negative and my cholesterol count was normal. However, an answer to my situation has not been finalized.
This past Monday (June 14, 2010ne 14, 2010
English: World English Bible – WEB
Izbrano poglavje ne obstaja!
WP-Bible plugin) I took a follow-up memory test which proved that my memory is failing. In fact, I am nearing the test measurement by which a diagnosis of dementia would be given. At the rate of decline, I could quite easily be there within one year or two.
Vascular Dementia continues to be the only plausible explanation for what I am experiencing.
Now here’s my dilemma: The only test that has not been done is an ultrasound of my neck area to see if there is any malfunction of my arteries in my neck region. For every Canadian, regardless of health, age, culture or race, a GP would refer them to a Vascular Surgeon to further testing to investigate artery malfunction. Because I have a diagnosis of MS, my GP is not permitted to refer me to a Vascular Surgeon. It’s that simple.
Because of my diagnosis, the only person that is able to refer me to a Vascular Surgeon is my neurologist. Neurologists, across Canada, have refused to do this. For every other Canadian this referral is done by your GP but since I have a diagnosis of MS, I am not permitted to see the Vascular Surgeon and potentially reverse my Vascular Dementia.
This is why the MS community is crying discrimination. By “community” I am referring to the Canadians that actually have MS, not the societies and scientists. We are the ones that are screaming and begging for relief. For me, time is the very essence. Two years may very well be too late for me.
Multiple Sclerosis in Canada is big business of multi billion proportions. We, MS patients, fund the livelihood of neurologists, researchers and pharmaceutical companies. We live with MS, they live from MS. Naturally they will be hesitant to give a green light to a treatment that may nullify billions from their coffers. After all, some scientists may have to lose their jobs. (There’s my cynical plea).
Here’s what my family has planned. I have an appointment with a private medical clinic in the fall to have the ultrasound and MRI done. My cost is $2500. Is it worth it? You bet when you are looking at dementia in the mirror.
Furthermore, we have begun conversations with a Vascular Surgeon in Brazil. We will know in about a week’s time whether they will do the surgery, from which I assume my family will begin to make travel plans.
Forget the fact, for a moment, that I have MS. I am a Canadian, a member and financial supporter of the Conservative Party of Canada. What’s needed is an appointment with a Vascular Surgeon, just as every other Canadian would be certain to receive. The only difference is that someone has looked at me and said, “Well, every other Canadian but you.”
I fully support further study and research on the subject of CCSVI just as the Minister of Health has promised. It’s exciting. But we can only assume that treatment for Gerry Peters will be five years from now. That’s if I wait for the Canadian health system to deliver. Even then we don’t know if neurologists will give a green light. I don‘t have anything near five years to wait for a potential treatment.
My Request: Lobby for me by requesting the Health Minister, Leona Agluk kaq, allow Medical Doctors to refer all Canadians to a Vascular Surgeon. My situation may have nothing to do with neurology. Allow me to be referred to a trained specialist that can treat me.
