must speak up

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby cheerleader » Mon Jul 20, 2009 11:29 am

FYI:
We've been down this road before, from May:
http://www.thisisms.com/ftopict-7216-.html

Scorpion said
Hey guys,

I reread my post from yesterday and it was not very well written(could of been the wine I was drinking at the time!) Anyway I really do believe there may be something to all this new research but I guess only time will tell. Hope everyone has a great day!!!


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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby whyRwehere » Mon Jul 20, 2009 11:45 am

Too weird, is it the alcohol again? :roll:
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Postby scorpion » Mon Jul 20, 2009 12:39 pm

I am doing the same as Loobie, spreading the word to friends, neighbors and social groups, golf, exercise, Pilates to which I belong. I have emailed Zamboni's research so many times - -----it is amazing how fast word spreads. There are probably 2-3 people who will be calling Dake just because somehow they got word of CCSVI through me.

CCSVI is a revolutionary concept compared to the status quo ms theories. It is refreshing and very promising which is created on sound science. No wonder it is catching fire. Spreading the word is the most powerful tool we have at this time.

I have truly spread the word in Finnish ms-forum. Cause this is something very BIG an something very concrete, problem which you can "see" with equipment.


The quotes above all came from the CCSVI forum and I could have added more. My point is that many people are searching the internet for a "hidden" cure or treatment that will relieve their symptoms or cure their MS. Until their is hard data to support the CCSVI theory, we should not be posting comments that are encouraging people to get stents inserted in their necks. I am not angry or drunk but simpley concerned that what is being hypothesized about CCSVI by some members on this board is being taken as fact. I guess I will sit back and wait for Zamboni's September presentation to see what the data is showing(since he decided not to post it on his web site as promised).
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Postby LR1234 » Mon Jul 20, 2009 12:44 pm

Are you going to get yourself tested Scorpion? to see if you have vein issues?
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Postby Lyon » Mon Jul 20, 2009 1:01 pm

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Last edited by Lyon on Wed Jun 22, 2011 2:00 pm, edited 1 time in total.
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Postby peekaboo » Mon Jul 20, 2009 2:36 pm

No one here at TIMS is claiming it is a cure for progression of MS and our stories after the CCSVI intervention never tell of a cure. To date NO ONE knows what the true outcome for anyone is that has had CCSVI intervention and I believe sincerly that no one is trying to market it as such. Some are faring better than others so it is not one size fits all. I have PPMS and truly believe that it will take considerable time for true recovery from MS if at all.
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Postby cheerleader » Mon Jul 20, 2009 4:07 pm

ummmm...I just mentioned how links to sites referring to CCSVI were removed from the health boards, and how fortunate we are to be able to link to other sites here at TIMS. No ulterior motives. No dastardly deeds. No desire for world domination.

...there's also no bullhorn, bandwagon, or boldface print.

I don't get where the anger comes from, but I believe it's misplaced.
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby patientx » Mon Jul 20, 2009 4:14 pm

cheerleader wrote:ummmm...I just mentioned how links to sites referring to CCSVI were removed from the health boards, and how fortunate we are to be able to link to other sites here at TIMS. No ulterior motives. No dastardly deeds. No desire for world domination.

...there's also no bullhorn, bandwagon, or boldface print.

I don't get where the anger comes from, but I believe it's misplaced.
cheer


For the record, that post at Healthboards wasn't edited because it mentioned CCSVI. It is the policy of that site not to allow links to other sites, no matter what the topic (personally I hate this policy). So there's no conspiracy to deny the existence of CCSVI.
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Postby Lyon » Mon Jul 20, 2009 4:28 pm

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Postby Bubba » Mon Jul 20, 2009 6:08 pm

ImageImage
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Postby peekaboo » Mon Jul 20, 2009 6:16 pm

Oh Bob I think you are a reicarnation of a Roman politic :peace:
You are very intelligent and funny when you let your hair grow :P

Bubba I am glad you are keeping your sense of humor :)
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Postby whyRwehere » Mon Jul 20, 2009 6:42 pm

temper temper, you guys....I was saying just that, don't try to strong arm people into not believing in ccsvi without proof and studies and lots of doctors and medical journals telling us it just isn't possible.....let us believe in what we want...free to be you and me and all that jazz.
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Postby Lyon » Mon Jul 20, 2009 6:51 pm

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Postby peekaboo » Mon Jul 20, 2009 7:26 pm

Now I am thinkin that U have an identity problem :P snark tp he Nth power
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Postby Lyon » Mon Jul 20, 2009 7:51 pm

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