(Canadian) MDs ordered not to shun MS patients

Cece · Post by **Cece** » Fri Dec 03, 2010 10:25 am

http://www.winnipegfreepress.com/canada ... 57264.html

First, they have to be ordered not to shun us. This didn't come intuitively?

Health Minister Theresa Oswald says the Manitoba medical community will not shun patients who have received a controversial medical treatment abroad for multiple sclerosis.

"We have been clear with our professionals in the Winnipeg Regional Health Authority, with the MS clinic, that we want them to have an open approach with patients regardless of what their needs are," Oswald said Thursday.

She was responding to complaints by MS sufferers who have travelled abroad for the so-called "liberation procedure," in which surgery is done to unblock veins in the neck. Many say the procedure has transformed their lives, giving them renewed energy and mobility.

However, they also say doctors in Manitoba are reluctant to give them the follow-up care they need, including providing them with prescriptions.

People have been having difficulty obtaining prescriptions too, then having difficulty obtaining care when clotting happened? I'd been aware of the latter, but not the former.

bluesky63 · Post by **bluesky63** » Fri Dec 03, 2010 10:33 am

I am aghast that they would even have trouble getting prescriptions. I hate to talk without knowing the details (actually I do it all the time but I mean online) -- I am assuming this is for anticoagulants?

How can this be justified? It makes my stomach lurch just imagining this.

OK, I just read the whole article, and it looks like it comes down to this:

"Oswald conceded Thursday she has spoken to a number of MS patients who have expressed frustration about follow-up care once they've returned to Manitoba.

"She said when it comes to 'untried, untested, not medically endorsed kinds of procedures,' there are professionals reluctant to engage in a follow-up treatment that hasn't been invented yet."

So it's a difference of professional opinion. And that's the essential point, isn't it -- not whether angioplasty itself is untried, untrue, and untested but whether certain symptoms that have previously been considered to be MS may be improved by a procedure to address various venous malformations.

But no matter what you think about the hypothesis, the standard of care for angioplasty follow-up includes anticoagulation, so that part ought not to be untried, untested, or not medically endorsed.

Very, very painful to be the humans caught in the middle of this.

malden · Post by **malden** » Fri Dec 03, 2010 11:03 am

bluesky63 wrote:I am aghast that they would even have trouble getting prescriptions.
...
But no matter what you think about the hypothesis, the standard of care for angioplasty follow-up includes anticoagulation, so that part ought not to be untried, untested, or not medically endorsed.
...

What prescriptions are we talking about?
If it is anticoagulants... two deaths caused by prescribed blood thinners are good reason for not to copy someone else's prescription and sign your name on it.

Cece · Post by **Cece** » Fri Dec 03, 2010 11:19 am

Malden wrote:If it is anticoagulants... two deaths caused by prescribed blood thinners are good reason for not to copy someone else's prescription and sign your name on it.

Not happy to see misinformation being spread.

One death over a year ago caused by a cerebral hemorrhage that, once begun, was made worse by the multiple prescribed blood thinners.

One death as an apparent combined result of clotting in the stent, lack of prompt treatment, and thrombolysis which is not a blood thinner but directly dissolves clots but with a complication risk of internal bleeding.

Bluesky, from the article:

Cara Bumstead said her dad had difficulty obtaining a follow-up prescription for a blood thinner when he returned to Canada after having the procedure done this fall. After his family doctor wouldn't write one, he wound up going to a walk-in clinic on Main Street.

bluesky63 · Post by **bluesky63** » Fri Dec 03, 2010 12:00 pm

Since you quoted me, Malden, I looked back at previous posts so I could respond with some context.

I see by reading your previous posts that this is not the first time you've had the information about these fatalities corrected.

Maybe you completely forgot the past interactions. (I do that all the time!)

Who knows why the misinformation is here again. As of now, how about we consider that we know the actual facts since Cece has cleared it up again, and we don't need to mis-state it again, and we can move on to the content of the thread that Cece started. Thanks.

Cece, thank you for the quote. I would have a hard time having faith in the family doctor after an experience like that.

malden · Post by **malden** » Fri Dec 03, 2010 12:18 pm

I wrote:

Malden wrote:two deaths caused by prescribed blood thinners...

And you, Cece, wrote (again):

Not happy to see misinformation being spread. ...

One death over a year ago caused by a cerebral hemorrhage that, once begun, was made worse by the multiple prescribed blood thinners. One death as an apparent combined result of clotting in the stent, lack of prompt treatment, and thrombolysis which is not a blood thinner but directly dissolves clots but with a complication risk of internal bleeding.

In both cases, cerebral hemorrhage and internal bleeding directly caused death.

Because blood was anabled to clott. Because of prescribed blood thinners. Because...

Two people dead after Liberation procedures. How this fits in 1/3, 1/3, 1/3 rule?

bluesky63 · Post by **bluesky63** » Fri Dec 03, 2010 3:01 pm

So the subject of the thread is that the health minister of Manitoba has formally committed to follow-up care of MS patients. That's good news for those people.

Although it is a shock that it required official intervention.

Cece · Post by **Cece** » Fri Dec 03, 2010 3:26 pm

bluesky63 wrote:So the subject of the thread is that the health minister of Manitoba has formally committed to follow-up care of MS patients. That's good news for those people. Although it is a shock that it required official intervention.

The other shock being that the lack of follow-up care extended so far as to not filling the prescriptions that would mitigate the risk of clotting that would require follow-up care that would also not be provided.

Whew, that was a long one. ;)

bluesky63 wrote:Very, very painful to be the humans caught in the middle of this.

thornyrose76 · Post by **thornyrose76** » Fri Dec 03, 2010 7:14 pm

In Canada the federal health minister stated this past summer that they won't allow MS patients to be tested and treated for CCSVI that there must be double blinded studies. But the rich one is they won't fund trials. Period.
I had hoped to move to the States after university bc I wanted to build a life for myself there. My misfortune that I got diagnosed with MS a month after I graduated. Ten years later I DETEST this back hole of a country- SHAME ON YOU CANADA, SHAME ON YOU!!!!!!