'N.B. doctors urge caution over MS treatment'

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

'N.B. doctors urge caution over MS treatment'

Postby Cece » Thu Jun 09, 2011 9:58 am

www.cbc.ca/news/canada/new-brunswick/st ... -1228.html
The New Brunswick Medical Society is warning multiple sclerosis patients to be cautious when pursuing alternative therapies outside of the province.

The medical society's warning comes after the provincial government's announcement of a $250,000 fund for MS patients seeking medical treatment outside of New Brunswick.

I like this next part:
"However, we strongly encourage any MS patients considering the Zamboni procedure, or any other alternative therapy, to have a conversation with their doctor about it," he said in a statement.

I have had conversations with my MS specialist about it. Full of misinformation, very negative. (Although I know others have had better experiences!)
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Postby 1eye » Thu Jun 09, 2011 12:51 pm

These people do not want me to get better. These people want me to leave veins in my neck alone, even if they are too narrow to carry enough blood to drain my brain. It is a circulatory problem, and I suspect fixing it will be very good for me. It will not, however, confirm any diagnoses or opinions on the progress of the disease that they have theorized for me. It will not make anybody any OHIP billings. It will not sell any DMDs. So I am to be allowed to remain ill.

That is one quarrel I have with our old buddy Hippocrates. "Do no harm" is all very well and good, but it leaves a bit of a loophole. Are we our brothers' keepers? I guess not. I prefer a healer who actively does things to improve health. I also think that harm can be done with words, ideas, and communication, that is far worse than what can be done to a single individual. A lot of people think that is OK when they are not at the office with their stethoscope on.

The other problem with bogus petulant foot-dragging due to inabiilty to face reality is that when practiced by powerful people, the result is that the machinery of science and of legitimate inquiry is gummed up and stalled, meaning that people like me may have to wait it out our entire human existences before the logjams are cleared. I don't have any suggestions for that. All I can do is keep my fingers crossed.

Nobody is buying the placebo thing anymore. Everybody knows the truth. It's easy.

You want me to stay sick? If I can't come up with the cash, I will. You want those high-EDSS sick people to just keep on dying? They will.

It won't stay that way forever. Things will change.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Cece » Thu Jun 09, 2011 4:47 pm

I agree, 1eye.

What I keep thinking is that inaction is a form of action. And that 2-year imaging studies without treatment studies is inaction. For one example.

Leaving people with known blockages in the cerebrospinal drainage (particularly when these blockages would be treated if they were in a dialysis patient, for example, or a thrombosis patient) is a form of inaction is a harm.

I know this is a new discovery but it is also a no-brainer, especially when the organ being poorly drained is the brain and is incurring damage.
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Postby Cece » Sun Jun 12, 2011 8:04 pm

http://dailygleaner.canadaeast.com/city ... le/1414447

Tim Donovan's response:
Tim Donovan is a Fredericton Junction councillor who has had MS for more than 20 years. He said it's important that patients speak with their physician before they undergo medical treatment, but that's not always possible.

"Some doctors talk about it and some don't," he said.

Donovan said he hopes the mounting pressure from Canadians for access to the treatment in Canada will help speed up the research process.

"I am all for caution. I'm all for research. I'm all for getting the data we need," he said.

"I would like the treatment to be studied and at least given consideration. Right now, what I see is that people are speaking out against (the liberation treatment) to be very cautious. If I was (overly) cautious two years ago, I'd be in a nursing home right now."
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