Multiple sclerosis treatment ignites hope, skepticism

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

Multiple sclerosis treatment ignites hope, skepticism

Postby scorpion » Wed Mar 30, 2011 1:42 pm

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Postby Lyon » Wed Mar 30, 2011 2:21 pm

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Postby CureIous » Wed Mar 30, 2011 9:36 pm

Lyon wrote:That said, my wife doesn't have aggressive or late stage MS so we have the luxury of not acting out of desperation and wishful thinking and instead looking at the "science" pragmatically and accepting that it's just not "there" yet.

:


You guys have both elevated this to an art form.... Such luxuries, would that we all had such luxuries... lol indeed.

Wanna come work 7/12's with me starting next week? That was a *reward* for stellar work performance, after not working in my trade for 3 years, from zero to 60 in 3 weeks. Luckily, has nothing to do with totally incredible and unbelievable stamina, brain included. Would that I had anything even remotely approaching this 5 years ago, but hey, I don't attribute it to wishful thinking.

I've looked at my results "pragmatically" and feel really REALLY smart for making the decision to fix my jacked up veins, see? Pragmatic goes both ways, plus I get the benefit of hindsight. It's 20/20 and crystal clear, best decision I EVER made.

Enjoy your science, in 5-10 years or so, you can go ahead and make a pragmatic decision and end up in the same spot, sounds like a wash as they say...

Your science won't even agree on what MS is in the first place, so why not start there and work your way forward? CCSVI is just junk science for the non-pragmatic wishful thinking dolts anyways!

I love being a dolt...
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Brainteaser » Thu Mar 31, 2011 3:53 am

Dr Williams' experience with a patient is what is so frustrating from the patient's perspective. I don't think we can all be stupid people and the IRs seem to recognise that. So that when we report significant and immediate improvements following CCSVI treatment, it seems as if many IRs are scratching their heads and questioning what happened and why. Because they don't know the answers to these fundamental questions, there seems a natural tendancy to back off when improvements are not sustained. In short, they're not sure what to do next, or they prefer the safety of what they do know or they get lent on by opinion-makers or the spotlight is thrown back on the patient who must have been mistaken that the improvements were actually real.
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Postby Lyon » Thu Mar 31, 2011 6:19 am

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Postby jimmylegs » Thu Mar 31, 2011 6:26 am

heard it already, guys...
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Postby THEGREEKFROMTHED » Thu Mar 31, 2011 6:56 am

Thanks for the entertainment! Love the back and forth bantering. Its healthy and at times even productive. I think we need a forum on this site where we could implement a boxing simulator that would allow us to put gloves on and beat the living tar out of each other. Kind of like the Wii Boxing that my twin eight year olds have been able to ehaust their emotional and physical tension. Would really be great for me since i am in this chair 24/7! :P :twisted: :P :twisted:
do we have any experts in this forum that could add a game sequence??

greek
liberated
ldn'ed
dieted
excercised
swanked
franked
spanked
trial rejected
baclofenned to hell
fat man ass crawled
tumeric overdose
vitamin d drained
solumedrol insaned
copaxoned
rebiffed
stressed out
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Postby scorpion » Thu Mar 31, 2011 12:34 pm

THEGREEKFROMTHED wrote:Thanks for the entertainment! Love the back and forth bantering. Its healthy and at times even productive. I think we need a forum on this site where we could implement a boxing simulator that would allow us to put gloves on and beat the living tar out of each other. Kind of like the Wii Boxing that my twin eight year olds have been able to ehaust their emotional and physical tension. Would really be great for me since i am in this chair 24/7! :P :twisted: :P :twisted:
do we have any experts in this forum that could add a game sequence??

greek
liberated
ldn'ed
dieted
excercised
swanked
franked
spanked
trial rejected
baclofenned to hell
fat man ass crawled
tumeric overdose
vitamin d drained
solumedrol insaned
copaxoned
rebiffed
stressed out


Love the idea!!!! :lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol:
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Postby Lyon » Thu Mar 31, 2011 1:24 pm

..
Last edited by Lyon on Tue Jun 21, 2011 3:26 pm, edited 1 time in total.
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Postby rainer » Thu Mar 31, 2011 8:47 pm

"We have identified a new factor completing the complex mosaic of multiple sclerosis," Zamboni said via e-mail. "Not only that, but we have identified a system to diagnose and treat that factor. Preliminary results look promising."

Zamboni needs to stop with the hyperbole as it only makes him seem less grounded in reality.
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Postby CureIous » Thu Mar 31, 2011 9:42 pm

Lyon wrote:
CureIous wrote: You guys have both elevated this to an art form.... Such luxuries, would that we all had such luxuries... lol indeed.

Wanna come work 7/12's with me starting next week? That was a *reward* for stellar work performance, after not working in my trade for 3 years, from zero to 60 in 3 weeks. Luckily, has nothing to do with totally incredible and unbelievable stamina, brain included. Would that I had anything even remotely approaching this 5 years ago, but hey, I don't attribute it to wishful thinking.

I've looked at my results "pragmatically" and feel really REALLY smart for making the decision to fix my jacked up veins, see? Pragmatic goes both ways, plus I get the benefit of hindsight. It's 20/20 and crystal clear, best decision I EVER made.

Enjoy your science, in 5-10 years or so, you can go ahead and make a pragmatic decision and end up in the same spot, sounds like a wash as they say...

Your science won't even agree on what MS is in the first place, so why not start there and work your way forward? CCSVI is just junk science for the non-pragmatic wishful thinking dolts anyways!

I love being a dolt...
Now there is the crux of the communication problem. You know, or at least think you know what you know, but are convinced that everyone who doesn't take it only at your word is an idiot, despite the fact that I know darned well you're smart enough to realize that science just can't and shouldn't involve nothing more than word of mouth.

You seem intent on considering anyone who needs to see actual proof before believing (skeptical people) as the enemy and someone to skirmish with rather than just accepting that everyone isn't as easy to convince as you are.

For somewhere around the thousandth time, I'm not "against" the theory of CCSVI, I hope to hell that something so clear cut does eventually prove true, it hasn't yet.


And you sir, seem to be convinced beyond a doubt, that anyone who hasn't waited for the science books to be revised, is supremely insane for such undertakings.

I don't care if you are skeptical about the theory, but what in the name of all that is sacred does that have to do with anyone's personal experience? Talk about apples and oranges dude, you missed the bus, this isn't a science site, it's a "people with ms site" to discuss stuff, nothing more, nothing less, so stop making it into something it is not, it's not a scientific round table either. You wont see a "This Is MS" publication, as such, this is just talk, nothing more, nothing less.

So all the science stuff is great, and skepticism of any and all science based stuff and/or lack thereof, but it hasn't a god blessed thing to do with the individuals, and that is where you crossed the line a long time ago, attempting to commingle the two, while accusing others of doing the same by using their results as some kind of scientific proof.

It doesn't give you license to outright call everyone who has ever been treated prior to whatever scientific proof YOU deem as necessary, as non-pragmatic, so get over yourself already.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Rokkit » Fri Apr 01, 2011 6:58 am

Lyon wrote:It was so interesting hearing that U of M IR (Dr David Williams) explain his reasons for skepticism because they've been among my questions from the beginning ie..... every aspect of the human anatomy and function was created with extra capacity in order to compensate for a good deal of age and wear and the vast majority of "blockages" we hear about regarding CCSVI are minor and it's hard to imagine that, for the most part. those minor blockages would/could offer enough restriction to cause problems regardless of how long they were left.

Dr Williams did have an interesting observation there which I've been pondering for a couple of days. One thing to keep in mind is that most pwMS have normal lifespans. I really doubt that would be the case for most of the patients Dr Williams is used to treating, if they were not treated. My point is that while there may be a big difference in the appearance of obstructions, there may be just as big a difference in the clinical impact, i.e. immediate, acute impact versus chronic, slow, ongoing impact. Dr Williams didn't elaborate on the types of obstructions he was referring to so I'm speculating and could be wrong, but it is a thought.
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Postby Lyon » Fri Apr 01, 2011 7:11 am

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Postby fernando » Fri Apr 01, 2011 8:10 am

Lyon wrote:I know that's not something answerable right now but those are among the questions of a skeptic.


In my view not you nor scorpion qualify as skeptics. You are simply relying "bad" news or repeating as a mantra "not enough proof". You do not present never an articulated, logical question, you always rely on verbal fireworks.

In my view, Patientx is a skeptic, always trying to make questions based on reasoning.
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Postby Lyon » Fri Apr 01, 2011 8:20 am

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