CCSVI facts from my point of view

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CCSVI facts from my point of view

Postby scorpion » Sat Sep 19, 2009 2:27 pm

1) Most neuros are not even interested in this theory. People on this site claim the reason is because neuros are "indebted to drug companies" or they " are stuck on old ways of thinking". This may be true of some neuros but common sense tells us this is not true of most of them. They do not believe in this theory because their years of experience and knowledge tells them it is Bolonga, I mean baloney.

2. There are people on this board who are obsessed with this theory for whatever reason. Please proceed with caution. They will try to convince you that the CCSVI theory is gaining momentum but stick CCSVI in your google search engine.

3. Many of us on this site do not believe in this theory. Not saying we are right or wrong, but newbies should know this.

4. Most of the people on this site hope there is something to CCSVI but have serious reservations. Do not believe that because of the number of posts on the CCSVI thread there is a majority consensus.
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Postby jimmylegs » Sat Sep 19, 2009 4:33 pm

weeeeeird where did that reply from before go????
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Postby Frank » Sat Sep 19, 2009 4:33 pm

Hi Scorpio,

I think the major reason for the reservation of neurologists and the lack of google-search-results is due to the novelty of this approach.

I think the Bologna conference shows that there is some serious interest in the new CCSVI field - 150 neurologists where in the audience.
From the papers/statements of Bologna I assume that they are seriously trying to establish an interdisciplinary (vascular, neurological, radiological, surgical) network to scientificly further clarify the role of CCSVI in MS.

While I'm with you, that its not the best choice to overhype CCSVI at the current stage, I would argue, that your presumption
They do not believe in this theory because their years of experience and knowledge tells them it is Bolonga, I mean baloney.

is not well-founded.

1. I believe many neuros are not even willing to take the time to seriously evaluate the current state of science/publications for CCSVI in MS.
2. I do think that most neuros dont have sufficient interdisciplinary expert knowledge/experience to assess the validity of the CCSVI approach all by themself.
3. At the current stage I dont see a major contradicting point that would justify calling the CCSVI approach a baloney.

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby Brainteaser » Sat Sep 19, 2009 5:43 pm

Scorpion, old son - as an MSer I say we should keep our minds open to all possibilities - CCSVI and anything else that comes along.

I seem to recall that you are right in to stem cells and your wife is a researcher or something. Fair enough - that's your bag. All I'd say is that I've tried two lots of stem cells which didn't do me much good. :( But that doesn't mean I'm against stem cells or would influence others not to try.

Hava good day, mate. :)

Phil
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Re: CCSVI facts from my point of view

Postby CureOrBust » Sat Sep 19, 2009 11:29 pm

scorpion wrote:1) Most neuros are not even interested in this theory.
I personally believe it’s simply a case of "once bitten twice shy". There have been endless reports of "miracle cures" for this disease and that disease, which have surmounted to nada. I think they are simply being "professional" in their approach of not jumping on the latest band-wagon. They are working on treatments with 70% proven effectiveness, and as far as they can see, CCSVI has 0% proven effectiveness by their standards; ie phase III trials.

I spoke to people managing MS research here in Australia about CCSVI, and when they realized I was very sober regarding this research, they started to joke about the whole "colostrum driven stem cells" fiasco that recently hit the net, and their phone lines, with me.

Although I hold great beliefs & hopes in the CCSVI possibilities, I can see where scorpion is coming from. He is not trying to deride it, simply acknowledge that there are others on this board that are not 100% convinced, and as such, new visitors to the site should not be "frightened away" by the large number of posts on CCSVI, or be under the impression EVERYONE on this board holds this opinion.
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Postby LR1234 » Sun Sep 20, 2009 2:07 am

Hey Jimmy,
I replied orignally then realised there were probably more wiser, knowledgable people on this site to validate the theories about vascular probs in MS.

L x
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.

Postby Lyon » Sun Sep 20, 2009 6:30 am

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Last edited by Lyon on Sat Nov 26, 2011 10:13 am, edited 1 time in total.
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Postby LR1234 » Sun Sep 20, 2009 7:07 am

Scorpion....you do go on a bit though!! Can we all agree that you have made your skepiticm regarding CCSVI clear and that you don't need to continiously post these thoughts. (If you want to...just continue on the other 5/6 threads you have started!!)

L
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Postby scorpion » Sun Sep 20, 2009 7:39 am

Hey Brainteaser. I definitely have an open mind when it comes to MS theories and treatments but I tend to "believe" in those that have been validated through rigorous scientific scrutiny. Although my wife works with stem cells and I am excited about their possibilities to treat and maybe cure many diseases I think the verdict is still out on how effective stem cells will be treating MS. I will tell you I am very hopeful that research is heading quickly towards a "cure" but that is only my opinion. Finally I am DEFINITELY not deriding CCSVI. In fact when I read some of the CCSVI threads I am amazed at the knowledge some of the members have relating to the vascular system in general. Ok, it is a beautiful day here in NC so I am going to get ny lazy butt off the couch and try and enjoy it!
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!!~!!1

Postby scorpion » Sun Sep 20, 2009 8:19 am

LR12354,

If you do not like what I post simply do not read it. I swear I will not be offended!!!! This is an open forum and anyone can say what is on their mind as long as it is done so in a respectful manner. Although I have serious doubts about CCSVI I have never asked anyone not to post their thoughts or feelings relating to it and I do no expect to be asked to quiet my voice. I promise I will not inundate this forum with my opionion on CCSVI but when I feel that people need to hear another voice I will start my 6/7 thread.. I honestly have a great deal of respect for the members who are passionate about CCSVI and for those sharing their after surgery experiences. People who come to us for answers and support DESERVE to hear not just one opinion on a subject but many so that they can make an informed choice.
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Postby LR1234 » Sun Sep 20, 2009 8:29 am

Hi Scorpion, I just don't understand why you have to go out of your way to try and ward people off CCSVI...let them go to the forum and decide for themselves...you are not doing anyone a great service by encouraging them to dismiss something that they don't yet know about!!!

Do you believe in LDN? Antibiotics? stem Cells? I don't see you constantly writing discouraging posts about all these things in the general section?!!!
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Re: CCSVI facts from my point of view

Postby whyRwehere » Sun Sep 20, 2009 8:31 am

scorpion wrote:

3. Many of us on this site do not believe in this theory.


Do you have the exact figures there Scorpion :wink:
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Postby patientx » Sun Sep 20, 2009 10:03 am

While I cannot say I agree with all of Scorpions points, I would like to address the reluctance of neurologists in general to pursue this theory. Recently, I have been reminded of two important considerations in any type of medical research: money and time.

I recently had a short conversation with the head of a hospital's MS center regarding CCSVI (he had read the papers I sent). He didn't immediately dismiss it (though he did bring up the "which came first" issue). When I pressed him on some sort of research project, possibly involving the hospital's vascular department, he responded positively, then asked me "who's going to pay for it."

Also, a few days ago I was on the phone to NIH. As I was wrapping up the call, I asked about CCSVI, and the person said they were aware of it, and had been having discussions about it. When I mentioned that I would readily volunteer for any study they might do, the woman told me: "Don't worry you won't miss anything. Even if we decided tomorrow to do a study, it would take a year before it could be set up."

I see many posts attributing the reluctance of neurologists to embrace this theory to their ties to drug companies. I am no big defender of neurologists in general (I have seen some bad ones), and some doctors do have improper ties to drug companies. But I don't think it is fair to impugn all doctors this way. I think it is unrealistic to expect researchers to drop their own studies, which may have been going on for years, to pursue a new theory with limited documentation. And, taking a look at the dislcosures of some of the neurologists who attended the Bologna conference, they are not completely without ties to drug companies.

Sorry for the length of the editorial. Now back to your regularly scheduled program....
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Postby RuSmolikova » Sun Sep 20, 2009 10:07 am

Let´s burn him out!!! :twisted:

I am sorry but I am grateful that Scorpion is the first who brought his oppinion that is not as conventional as on CCSVI threads.
As far as I understand his posts, he doesn´t discourage people to go to that threads, he just says: "Think twice."
And he doesn´t have to write warnings about LDN, antibiotics or stem cells threads, I think. People there are not as fanatic as the others.
Reading their posts I have a feeling that they do not have anybody who would be cured by their miracle treatment but they already know that all the docs who don´t repeat Dake´s, Zamboni´s and Simka´s words are absolutely out.
I personally don´t like when someone has a black and white glases...
I am sorry. 8)
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Postby LR1234 » Sun Sep 20, 2009 10:48 am

I love the fact that finally people are looking into other ways to treat MS and I don't think we should discourage any of them!! I am personally not sure if CCSVI is the whole story but the more people that go to their neuros and ask about it the better because hopefully this will lead to more research.
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