re: progressive MS not assoc, with CCSVI

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re: progressive MS not assoc, with CCSVI

Postby Mathd » Sun Aug 21, 2011 7:56 am

I dont know why the previous topic was locked,

but from my point of view, the results of the study is complete bullshit!

I'm one of the lucky 10% with primary progressive, and I had procedure done 4 months ago. 3 veins blocked and my edss score has passed from 5.5 to 4, and it was assessed by my neurologist. Idont have major new improvment since but my legs are going stronger because now I have enough energy to train them, or to work in my yard.

I even restarted to do whitewater kayaking since the operation, and I'm carying my 35pounds boat by myself into trails. Before I wasnt capable to walk with a grocerybag on a floor, so walking with something heavy on steep hard ground is a major improvement...

Im just tired to hear negative study done in 4 months by some neuro that are not trained to look at veins...
its like calling an electrician to repear a leak in a pipe!
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Re: re: progressive MS not assoc, with CCSVI

Postby frodo » Sun Aug 21, 2011 4:51 pm

Mathd wrote:I dont know why the previous topic was locked,

but from my point of view, the results of the study is complete bullshit!

I'm one of the lucky 10% with primary progressive, and I had procedure done 4 months ago. 3 veins blocked and my edss score has passed from 5.5 to 4, and it was assessed by my neurologist. Idont have major new improvment since but my legs are going stronger because now I have enough energy to train them, or to work in my yard.

I even restarted to do whitewater kayaking since the operation, and I'm carying my 35pounds boat by myself into trails. Before I wasnt capable to walk with a grocerybag on a floor, so walking with something heavy on steep hard ground is a major improvement...

Im just tired to hear negative study done in 4 months by some neuro that are not trained to look at veins...
its like calling an electrician to repear a leak in a pipe!


Do you mean that you participated in the study and they counted you as a negative case?
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Postby Cece » Sun Aug 21, 2011 5:06 pm

I didn't interpret what he said that way at all.
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Postby Mathd » Mon Aug 22, 2011 7:03 am

no, i wasnt in that study...
but Im PPMS, so in the 10% of lucky people with PPMS(without drugs, treatments, hope)

anyway i'm in canada so I can wait a while before being on a study...
and the PPMS people are always excluded of trials, because we are not enough...
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Postby JCB » Mon Aug 22, 2011 7:29 am

I'm with you Mathd. I also have a diagnosis of PPMS. I have seen some improvements that are noticeable by others. More alert (awake) especially in the morning. I sweat. Heat is still not my friend, but it is not debilatating. I can walk a mile+ non-stop.

There is more learning to do, but I am a believer.
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Postby MegansMom » Mon Aug 22, 2011 7:34 am

If you think that this study is valid,you have not looked at the PPMS people on YouTube or on CCSVI tracker.

It's not a study but for these scientists to state as if their results are a fact is BS!

It was just a fact in this study.

It's not a fact it's a finding.
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My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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