Life returns for MS sufferer following U.S. surgery

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

Postby ikulo » Wed Mar 30, 2011 6:35 pm

Nicely put Center...

The issue with this particular forum is that we have two very vocal extremes on the opposite side of the argument that drag down the conversation to their level, leaving a vacuum in the middle area where most of the lurkers probably reside.
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Postby Lyon » Wed Mar 30, 2011 6:43 pm

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Last edited by Lyon on Wed Jun 22, 2011 4:28 pm, edited 1 time in total.
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Postby Kleiner » Wed Mar 30, 2011 7:49 pm

Lyon wrote:
CenterOfGravity wrote:Honestly, I think the healthy skepticism would be taken more seriously if it wasn't 100% unbridled disbelief in the possibility that the CCSVI hypothesis could have some validity.
You honestly haven't paid enough attention to the conversations if you really believe that.

I personally have said numerous times, once in the last week, that I have hope for the future of CCSVI and that I'd be a fool not to since my wife has MS. I don't know how you even came up with that.



Well put Center of Gravity, I have faith that 95% of the people on here can see through the Lyon's of the world and amazingly without their "help" can research, find the positives and the negatives of the issue and make an informed decision. I for one, am not going to come on a website, read 10 positive stories and sign myself up for a procedure without doing my due diligence. And Lyon ripping apart every positive story, whether it be anecdotal or not is really not helping me in any way, although he claims that is his goal here...to help educate. I see no issue whatsoever with posting positive stories, it gives hope to a lot of people that don't have a lot of hope in their lives, and there are certainly enough not so positive stories on here to keep everyone in check.

I'm getting the feeling that Lyon just likes to antagonize and flip flops as it fits his point. Above he states "he has hopes for the future of CCSVI" but I seem to recall not so long ago talk of something "circling the drain" and it "being all over but the crying"...

I truly respect healthy skepticism, but this is well beyond that...
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Postby hope410 » Wed Mar 30, 2011 8:42 pm

It's so interesting how the same material can be interpreted so vastly differently. Words are certainly subjective.

I don't find Lyon extreme in any way. For all things, I'd like the strengths and weaknesses pointed out. Lyon focuses on the weaknesses. That adds to our information base.

Why is that extreme or maysaying? To me, it just brings greater breadth of information, pointing out weaknesses in information and missing pieces to this puzzle.

I just wonder why people take such offence to that. Any scientific inquiry requires challenging the data.

This place would be shallow and dangerous if we didn't have people who challenge what is presented, identify what is missing, bring more information or a new perspective to bear.

In my view, this ADDS to the substance here. What detracts is namecalling and the criticism of people for not blindly accepting what is presented. Why do people want robototrons who just blindly accept what is posted? It makes me very suspicious of those who seem so defensive of a good debate and evaluations of all aspects of info, good AND bad. I tend to find those who don't want the skepticism and don't want to explore the information lose credibility. It is those who want to muzzle the free exchange of ideas that I begin to ignore. Because I wonder what their agenda is that they feel threatened by skepticism and don't want to investigate ALL aspects in its entirety.

I personally learn so much more from the challenging of information, and it adds to my knowledge base. It benefits me greatly.and adds to this forum in my view. What I am tired of is namecalling such as naysayer, etc. That's getting old. Argue something on its merits, don't stoop to trying to discredit a point of view by discrediting the author, it's a cheap arguing trick and demeans the person using it, not the person it is being lobbed against.

Just remember, not everyone sees input the same way. I enjoy hearing all aspects and would leave if this forum didn't have members who challenge information. To me, this benefits the forum and scientific inquiry and our understanding. I want to hear ALL opinions. I learn more that way.
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Postby MrSuccess » Wed Mar 30, 2011 9:09 pm

bob has access to another IP address .....

This guy needs help .... or handcuffs .



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Postby Lyon » Thu Mar 31, 2011 1:25 am

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Postby Cece » Thu Mar 31, 2011 6:41 am

Other symptoms disappeared or, at least, diminished. As a result, Taylor has stopped several medications designed to combat fatigue and muscle spasms and reduced the dose of others.

Her muscle spasms have vanished, though some tremors are still present at night. Once only able to walk short distances with the aid of a cane, she now uses it only for long distances or if she's tired.

"I'm driving the 14 hours to P.E.I. to visit my family," she said. "I usually fly. Even with my husband driving, I used to not be able to sit very long - I couldn't even get to Greely or the east end."

I wonder if the latter will be true for me. I am miserable during long-distance driving, even as a passenger, however I haven't attempted anything over an hour since my procedure.

Do you see how Big Pharma gets hit not just by the reduction of people using CRABs but also with all the symptom medications for fatigue and muscle spasms etc? We are cash cows. I too have greatly reduced my use of fatigue medication (nuvigil/provigil).
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Postby erinc14 » Thu Mar 31, 2011 7:03 am

Lyon wrote:
Cece wrote:You have to admit, there are a lot of wonderful outcomes out there. I wouldn't be able to post these sorts of quotes if they weren't published in the first place.
Yes, if I wanted to replace every vestige of science with nothing more than layman opinion, I would have to admit that.

Cece wrote:Here is one that I posted where the patient had a neutral nothing-changed sort of outcome:
As long as you feel absolved, nothing is more important to me.
i assume when you attend a wedding you inform the newlyweds that 50% of marriages end in divorce .
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Postby KDGO » Thu Mar 31, 2011 9:00 am

thornyrose76 wrote:Resulting studies down the road will basically con firm what it looks to be at present, that angioplasty works for some not others.

Most of the threads that I read, somewhere within them, refers to "just wait for the trials". I am not interested in the testing trials as much as the procedural trials. These trials, all perhaps underfunded, the NMSS not funding them are relying on our fundraising help. We have never had Biogen, Teva, etc ask us to help fund their trials...this is new to us. This is where our efforts should be. We say that this is not going to be forgotten and pushed under the rug...but based how long this funding and trial time lasts...who knows. Perhaps this is what the greedy powers that be are hoping for. Certainly the Canadians have rallied. I am hoping in the States we find the best way to rally too. Any ideas?
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Postby fogdweller » Thu Mar 31, 2011 10:19 am

Lyon wrote:
fogdweller wrote:See your pm
Nothing so far...


Try again, I think I got it this time.
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Postby Lyon » Thu Mar 31, 2011 10:56 am

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Postby scorpion » Thu Mar 31, 2011 11:45 am

ikulo wrote:Nicely put Center...

The issue with this particular forum is that we have two very vocal extremes on the opposite side of the argument that drag down the conversation to their level, leaving a vacuum in the middle area where most of the lurkers probably reside.


Just a fyi a vocal extreme would be someone who is convinced that CCSVI is the answer to curing MS(which there are many of on here but you seem to have no problem with them) and someone that believes CCSVI to be junk science(can not think of anyone on here that says that). I would consider myself maybe leaning towards the junk science side but certainly I am open to the possibilty that Zamboni is on the right track and I am dead wrong.
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Postby fogdweller » Thu Mar 31, 2011 2:29 pm

KDGO wrote:
thornyrose76 wrote:Resulting studies down the road will basically confirm what it looks to be at present, that angioplasty works for some not others.

I am not interested in the testing trials as much as the procedural trials. These trials, all perhaps underfunded, the NMSS not funding them are relying on our fundraising help. We have never had Biogen, Teva, etc ask us to help fund their trials...Any ideas?


This spaqce woulod glaadly be fundewd by medical device companies, to wit baloon catheter manufacturers. Probably also IVUS caheter manufactuers, and all the other angiplastyl folks (Dye, guidewires, imaging companies (probably MRI companies for the Haake protocol) etc. We just need to put together the numbers to show a potentially large market (most of the MS patients, and many two or mor procedures).
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Postby NotFound » Thu Mar 31, 2011 3:13 pm

eric593 wrote:I've also noticed the # of people here reading and/or participating has definitely waned in the past few months. So many people who used to post regularly suddenly vanished without a word or note about how their treatment went.


I for one do not participate much anymore exactly because of the quarrels like this one became a standard, not the exception they once were.

I (even post-procedure) do not have enough energy to sift through all the bickering to find pieces of useful information.
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Postby Cece » Thu Mar 31, 2011 3:22 pm

fogdweller wrote:This spaqce woulod glaadly be fundewd by medical device companies, to wit baloon catheter manufacturers. Probably also IVUS caheter manufactuers, and all the other angiplastyl folks (Dye, guidewires, imaging companies (probably MRI companies for the Haake protocol) etc. We just need to put together the numbers to show a potentially large market (most of the MS patients, and many two or mor procedures).

Volcano, an IVUS manufacturer, was a sponsor of ISNVD, iirc.
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