This Is MS Multiple Sclerosis Community: Knowledge & Support

Although there for other reasons, I took the opportunity to discuss CCSVI and liberation with my GP today. My GP has been quite supportive of my decision to go to Poland, but today he said that he couldn't see how blocked veins could cause hypoxia... which are only caused by blocked arteries to the brain... (has he been reading Colin Rose's BS?).

Anyway, that little argument wasn't what bothered me. It was his later saying that it is highly unlikely that anything will be done in our part of the country (or anywhere in Canada) until the whole CCSVI/MS relationship is sanctioned by neurologists... that if anything will happen it will be led by neuros. I can imagine how soon that will happen!

Some on TiMS blame this situation in Canada on our health system, but I would only agree with that in the sense that people make up the system, and our health system doesn't do much to reward health professionals for being innovative or even open-minded. Just remember that the situation in US hasn't really been much better, though some of the reasons are different.

For all those who insist that we must "go local", just remember that many of us live far away from big research and medical centers. In many parts of our continent, I couldn't (in good conscience) advise anyone to pin their hopes on going local. While, eventually, this must go local to really reach the masses, how can you ask individual people who are going downhill quickly to give up their only real hope for changing their personal circumstances? Given that operations in the US have been shut down before, I wouldn't even advise an MSer to give up an opportunity overseas because they have been contacted by, say, Albany.

Anyway, a depressing meeting. Sorry to vent. *sigh*

...Ted

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Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com

Outflow determines inflow. When you reduce outflow, inflow is reduced as well. (And inflow comes via the arteries, with their acknowledged role in oxygenating the brain. Outflow is reduced because of the ccsvi blockages.)

Sorry it was a downer of a meeting.


I have to add, this is absurd. Neuros will not be leading the research into interventional vascular techniques.

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

Fiddler: That's a bummer about the meeting with your GP

I agree with you that our public health care system is not the demon. MSS Canada wrote to Ontario MPPs recently, telling them not NOT to fund CCSVI treatment. With "advocates" like that, I think the battle will be a long one.

As I said on another thread, I suspect a similar letter went to elected officials in other provinces and territories, but MSS Canada has not responded to my enquiry about that. (Why am I not surprised?)

We know the position of the neuros on this. But, where are the Canadian vascular surgeons and interventional radiologists? Except for Dr. McDonald and Dr. Guest (an IR working with Dr. McDonald), we haven't heard much from them.

We need to keep up the good fight. When do you leave for Poland? I read on another website about the vast sums of money leaving Canada for treatment elsewhere.

Blaze, I've been to Poland... liberated on April 29th. It's all the other folks I'm thinking about now, who aren't getting the opportunity.

But, as I mention on my blog, I had some good news today, too: a friend from Quebec who was liberated in Bulgaria on Monday is having tremendous immediate improvements, and it was also great to hear about Barb Farrell's continued improvements today, as well.

...Ted

_________________
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com

Hi Fiddler--
Here are some wonderful Canadian groups that are working together so that Canadians might be able to stay at home for diagnosis, treatment and the very essential aftercare. International travel is not possible for many- due to physical or financial limitations. Check out these active groups, and see if there's anything there that might brighten your outlook. Take care,
cheer

http://angioplastyforall.com/

http://www.blockedveinsmsresearchgroup.com/

http://www.msliberation.ca/MS_Liberatio ... lcome.html

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

fiddler,

I know what it feels like to be brushed off by a doctor. Last week I saw a new neurologist about my headaches and I tried to give her the NYT article about CCSVI. The result was a look of distaste and she pushed away my hand with the NYT article (I had the real paper). Then I got a lecture. I was seething with anger but kept a calm face. And what is so funny is that neurologists not only don't know how to help people with MS but they also don't know much about how to help people with headaches. I keep reading about people who have been liberated and have relief from fatigue and headaches and I wonder what role CCSVI might have in headache ?

Anyway, we keep trying to tell our doctors but many won't listen. I just get a real boost whenever someone hits the jackpot with a new vascular surgeon or IR.

ozarkcanoer

Hate to add to the dismal state of affairs in Canada - a Beautiful place to live, a terrible place to be with MS - but I had a similar talk with our Family Doctor although he is open to giving any info about my Wife's condition to any Clinic where we might be lucky to find treatment.
I also just got a reply from our Member of the BC Legislative Assembly
(that's our Provincial Parliament for those not familiar with Canada's political system); I had asked him some very pointed questions re getting treatment via the Provincial Medical Services Plan, what he though about the Government of Kuwait recognising CCSVI etc, etc (you all know the questions we can ask thanks to TiMS education), his reply -

"In my previous letter to you, I outlined the possibilities and dangers of Dr Zamboni's treatment, an experimental diagnostic test and an experimental surgical procedure for MS called CCSVI. As well, I noted that Dr Zamboni, who pioneered this research, has cautioned that people with MS should not rush to seek the surgical procedure outside of proper clinical studies.
In this case, I will trust the opinion of the College of Physicians and Surgeons in B.C., who must ensure that physicians practice safe and ethical medicine. At this time, they agree with the Ministry that there is not enough evidence to support this procedure".

So it's not just the MS Society "poisoning" the minds of our Politicians but also the leaders of the actual "doctor's union".

We are still waiting for my Wife to get treatment, possibly (and hopefully soon) in NY, still getting more info on Mexican Clinics, but once she's had the treatment, and hopefully it is successful in giving her some improvement, I'm going to be so tempted to take the letter I just received and ....... no you don't want to know what I'll be tempted to do!!!!!

story's like this really bother me. By now most GP 's worth their salt have heard of CCSVI and our famous Dr. Zamboni.

As I have said before , professional medical people do not accept advice and paper work from the Great Unwashed Public , easily.

There are exceptions .

What HAS to happen is ... white coat talking to white coat .

That is what is happening ....... at an excruciatingly slow pace





Mr. Success

I have secured treatment. But it is not local. So I say that if you have the $ you should head to the first reputable place that will treat you unless you can afford to wait.

The thing is, everyone also needs to write letters to IRs in their area. That is what will get a WHITE COAT talking to other WHITE COATS. I actually just got done stuffing 123 envelopes with a letter to be mailed tomorrow.

Honestly it really helps releave the stress while I wait. Plus it makes me feel a lot better knowing that I am giving it my best shot to get the WHITE COATS talking. Paying it forward.

Hi BadCopy and All,

This might be a little cheeky...


but does anyone have form type letters that they use to send to the likes of IR's, Neuros, politicians etc...

I am not the greatest at writing these sort of letters and would be good if i could get my hands on something.

I would like to lamb baste everyone i can with these letters and include the article about Barb that has been recently written.

Liva,

Did you get my letter thru PM?