This Is MS Multiple Sclerosis Community: Knowledge & Support

I'm a little confused. The first guy on W5 - Steve(?). Favaro said that he need a walker because of balance issues and because he had numbness in his left hand and foot. Yet after his procedure, he asked the nurse to shake his hand because now he could move them even though his hand used to be "useless". He also said he could move his toes on his left foot afterwards.

But numbness/sensory issues have nothing to do with MOVING your limbs since that's not sensory, it's motor.

So did he have sensory issues before like they reported or did he have motor problems like he reported were improved afterwards but no mention of having motor problems before treatment?? It was inconsistent to me.

Where do I find the link to the "NEW" CTV piece if it is "online now"?

Thanks.

Lyon-

Like you, I'm a CCSVI/MS skeptic. May I join your club?

Whether Liberation will be accepted as a suitable MS treatment or just become another dead end will be determined in record time. Testing for blocked veins and arteries is accepted medical practice. Performing balloon procedures for narrowed veins and arteries is accepted medical practice.

Why does there seem to be such a strong association between CCSVI and MS? Docs in Poland say 95% of their MS clients had narrowings. Zamboni says 100%. Scalfani says 100%. Buffalo says more than 50%.

IRB's will be approved shortly in the U.S. I'm hoping to move from skeptic to believer, very soon.

Lyon I've enjoyed reading your posts immensely and feel I have
learned alot from them.

I feel confident that there is enough preliminary positive feedback from
the individuals that have had the procedure
to warrant more resources to help expediate this process.

Maybe this will end up being a very wasteful endeavour of researchers
time and efforts but we won't know that until more patients are scanned
and tracked.

The MS researchers here are funded largely by the tax payer
and private donations. Don't you want to have some say in this
process? And further what do you propose?

A really interesting link. Thanks for posting it. I liked the patients' stories and the research is brilliant. But what I find really interesting is Freedman's avowed standard of proof (cf CCSVI). I find it amazing that the same man who insisted CCSVI is not proven as a treatment because there is only a small number of results and those are based on subjective reports says here that the unquantified evidence of ONE PERSON (Jennifer), unmatched to any control and with no effort to control any placebo effect is PROOF. 'Jennifer convinced me.'... 'If cure is long lasting remission. We are there!' Why does he not apply the same standard to CCSVI. Anyone want to volunteer to be the Jennifer for CCSVI?

Thank you so much for this, bretzke. It seems that Dr. Freeman is willing to accept "death as a possibility" for patients in his studies. Yet a relative and routine procedure such as venous angioplasty is too dangerous. Can we see a clearer example of cognitive dissonance?
Oh, and my husband would love to play Jennifer for CCSVI...and I think there are about 300 other treated people who would do the same.
cheer

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

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More excellent reporting W5. I can't thank yo enough for following up on this most important development.

Freedman??? Seriously? Did anyone else catch that at one point in the interview he talks about the placebo effect and states something to the effect that the improvements reported so far are subjective and that you must show that something is %50 effective, and that to prove something is effective you must go beyond that."

Hmmm...does he ever prescribe CRABS? My understanding is that they have been found to perform only slightly better than placebo (something like %33 as opposed to %30 placebo.).

Good grief.

Hope (yes PCakes, like the rubber tree plant

_________________
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Dx March 2003
Avonex

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Why didn't Freedman have to give "sham" chemo to his patients for his immune ablation/stem cell treatment? Why no mention of placebo in his studies? Why no Annals of Neurology hit piece on the death of his patient (printing his name as a matter of public record without his family's permission) in a very dangerous, experimental, unproven treatment?

link
cheer

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

..

Freedman's apples get funding....and he doesn't want to share.


http://www.mssociety.ca/en/research/ste ... search.htm
cheer

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

Freedman isn't b*tching and complaining about the failings of his own apples.

..

Lyon-

I haven't heard many folks claim that treating ccsvi is the CURE for ms. If liberation can be shown to be an effective treatment, I'm all for it. Current ms drugs are considered effective if they slow down progression 30% of the time. They don't stop progression, they just slow it down. If ccsvi treatment has similar success, I'll become a believer.

CCSVI is a stand alone condition. Trials could be conducted with no concern regarding the relationship with ms.

This snowball is rolling down hill and picking up steam. As long as enlightened patients keep up the pressure, we'll have an answer one way or the other, very soon.