Controversy continues to surround MS liberation treatment

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

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Postby concerned » Fri Dec 10, 2010 10:09 am

Just to clarify, as it seems some readers are getting confused again, I didn't write the article.
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Postby Ruthless67 » Fri Dec 10, 2010 10:19 am

concerned, Thanks for the link.

Dr. Patti Forgeron, a physician specialist who provides rehabilitation for MS patients said, "There are many places half a million dollars could be used to assist patients. Just ask!"

The thing is, in all respect, the PATIENT'S are asking, and they are asking for research into CCSVI, not more rehab. I understand her dedicaion and concerns but I like Dr. Kennedy's line of thinking better.

Dr. Allison Kennedy said "He'd be comfortable with the New Brunswick government using some of the $500,000 to help New Brunswickers attend the clinical trials."

I'd also like to see some of the money available for follow up for CCSVI patients in Canada, regardless of where the procedure takes place.

Respectfully,
Lora
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Postby Cece » Fri Dec 10, 2010 10:22 am

When do you think CCSVI will start to see some of that money? I'm not talking the little drabs so far, but the real money? The search for a break-through with MS has been very very well funded, but it's all gone to the neurologists.
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Postby scorpion » Fri Dec 10, 2010 11:06 am

Cece wrote:When do you think CCSVI will start to see some of that money? I'm not talking the little drabs so far, but the real money? The search for a break-through with MS has been very very well funded, but it's all gone to the neurologists.


Cece I really think CCSVI will start seeing some of that money when and if some of the current trials start showing a link between MS and CCSVI.
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Postby scorpion » Fri Dec 10, 2010 11:35 am

Ruthless67 wrote:concerned, Thanks for the link.

Dr. Patti Forgeron, a physician specialist who provides rehabilitation for MS patients said, "There are many places half a million dollars could be used to assist patients. Just ask!"

The thing is, in all respect, the PATIENT'S are asking, and they are asking for research into CCSVI, not more rehab. I understand her dedicaion and concerns but I like Dr. Kennedy's line of thinking better.

Dr. Allison Kennedy said "He'd be comfortable with the New Brunswick government using some of the $500,000 to help New Brunswickers attend the clinical trials."

I'd also like to see some of the money available for follow up for CCSVI patients in Canada, regardless of where the procedure takes place.

Respectfully,
Lora


Het Ruthless 67 I did not read the whole article but when they mentioned using the $500,000 to help people attend the trials were they referring to transportation, lodging, etc?
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Postby thornyrose76 » Fri Dec 10, 2010 7:25 pm

The federal gov't of Canada won't support the testing and treatment of CCSVI because there has not been enough proper testing of the efficacy of it and yet they won't fund a proper study. So, now what fellow concerned canadian MS community, what do we do?
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Postby thornyrose76 » Fri Dec 10, 2010 7:29 pm

And yes good for Saskatchewan but there needs to be some federal leadership here in this country, and federal funding, it's our tax dollars too or does that not count?
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Postby bruce123 » Sat Dec 11, 2010 7:37 am

scorpion wrote:Cece I really think CCSVI will start seeing some of that money when and if some of the current trials start showing a link between MS and CCSVI.


Here is the major problem as I see it. The link between MS and CCSVI is irrelevant! If the current studies that at funded by the MS Society show no connection then research will not continue to be funded.

What if the studies found that CCSVI is less prevalent in the MS population? How would that change the fact that improving blood flow with angioplasty improves the lives of MS sufferers? There are thousands of people of who would vouch for the fact that none of the drugs that they take have provided near the relief that angioplasty did.

We need research on the treatment, not on the statistical prevalanse of CCSVI, as interesting as it is.

(and no, I don’t have scientific proof of the thousands of people)

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Postby CCSVIhusband » Sat Dec 11, 2010 8:01 am

^ agreed. But your post will probably be washed over Bruce ...

it makes too much sense.

No CRABs or gabapentin or baclofin helped my wife's "tightness and numbness" ... (things a doctor can't tell you you have - you just know)

she got angioplasty ... boom, those things were gone in less than 24 hours. I'm sure it's just a "coincidence" and "placebo" ...
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Postby Lyon » Sat Dec 11, 2010 8:28 am

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Last edited by Lyon on Sun Nov 20, 2011 5:07 pm, edited 2 times in total.
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Postby jgkarob » Sat Dec 11, 2010 8:30 am

er...what I don't understand is - if your wife wasn't diagnosed with MS, then how did she have access to the CRAB drugs?
In the UK (and most of northern europe) you can't get a diagnosis until you have had 2 clinical significant events and in the UK you won't get CRAB drugs until you've had 2 relapses.
Gosh, things must be very different in the US if you have CRABs before diagnosis.

Your point earlier about people not having relapses or progression for a year following Liberation and comparing this to Tysabri/CRAB results?
I hadn't had a relapse for 4 years until last year. That's 10 years on Rebif and 4 relapses and 4 more lesions in that time with no real measurable progression.

We are all different.

I was 100% for Liberation in January this year and even prepared a presentation for my neurologist.
Now?
No. I've been around the MS world for 10 years now and only encountered one person who has had a lasting benefit from Liberation. I have doubts.

This is not pure scepticism, but more of an agnostic questioning.
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Postby concerned » Sat Dec 11, 2010 8:35 am

Great points jgkarob!
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Postby pairOdime » Sat Dec 11, 2010 8:53 am

Minimally invasive venoplasty to treat CCSVI is a major medical breakthrough. Momentum has accumulated throughout 2010. Expect a tidal wave in 2011. It's Big, it's Real, it's a Paradigm Shift.
It's a paradigm shift
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Postby Lyon » Sat Dec 11, 2010 9:02 am

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Last edited by Lyon on Sun Nov 20, 2011 5:07 pm, edited 1 time in total.
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