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

Postby Lyon » Sat Jun 27, 2009 3:05 pm

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Postby Sharon » Sat Jun 27, 2009 3:18 pm

Yes, you need the MRV and the Doppler - you will not get those results unless they find something incidental (tumor, etc).

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Postby bestadmom » Sat Jun 27, 2009 3:20 pm

Thanks for posting this. I spoke to Christina, not Cheryl, who a few of you spoke with.

I'm going to call her on Monday to try to confirm what they are willing to give copies of. If there's no possibility of getting the mrv, I'm not sold on the trip. It's valuable from a being part of medical science point of view, but I'm not mobile, so it's a lot.
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Postby peekaboo » Sun Jun 28, 2009 9:07 am

Lyon wrote -
Spur of the moment, I asked her if she'd be interested in being in the study and she said she would, so I just emailed Dr Guttman to see if there is anything worthwhile for the study my wife can do in this next week. I'm sure it's all too short of notice, but we'll see.



I'm glad bob that you are keeping an open mind...hope short notice won't be a problem.
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Postby Lyon » Sun Jun 28, 2009 9:45 am

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Postby Sharon » Sun Jun 28, 2009 10:21 am

Lyon wrote
CCSVI seems to be present 100% of the time in MS and 0% of the time in healthy controls


Just a little clarification - Zamboni's research did show that 100% MS'rs had at least two blockages. In the healthy control group there was less than 5% with blockages and they only had one. So the healthy control group did have a few blockages, not 0%. Other neurological disease had 0%. I wonder if those 5% healthy control group will be diagnosed later on with MS ----only time will tell. :?

I got an email from Dr Weinstock-Guttman this morning, which I thought was impressive for a Sunday morning, and she hinted that we might be able to work something out on short notice and that we'll (probably my wife) will be hearing from Cheryle soon.


It is good to hear of another doctor who is patient responsive and is taking the time to communicate with you. All of us have had too many experiences with doctors not listening .
Good luck - let us know what happens. To have a TIMS member in the study would be more information for all of us.

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Postby Lyon » Sun Jun 28, 2009 10:56 am

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Postby mrhodes40 » Sun Jun 28, 2009 6:04 pm

I am glad that you had someone to send to Bob, I hope it results in some interesting developments for everyone's sake. That's great news!

Despite the fact that CCSVI isn't the "cause" of MS


I'll bite. Reference that statement Bob. How do you know CCSVI can't be the "cause" of MS?

I don't get why you are so adament on that point; what do you think you have as a deal breaker in your back pocket the proves this "can't" be the cause of MS lesions?
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Lyon » Sun Jun 28, 2009 7:02 pm

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Postby chrishasms » Sun Jun 28, 2009 8:31 pm

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Postby guitarguy » Sun Jun 28, 2009 10:42 pm

chrishasms wrote:Bob what will you say to Christ when he returns? Are you going to give him reasons he can't be Christ, then when he gives you a 100 papers showing direct correlations between Christ and this person you see before you, you will still tell him there is still no reason to believe it is him?

Bob there are times when I don't get you. The level of hope you quell under your thumb drives me nuts. Does your wife find inspiration and hope in your "matter of fact, this is how it is" views?

Just because the Tovaxin bubble burst please don't wreck peoples hope over here Bob. It's a breath of fresh air in this topic to hear such good things. Notice, some people stopped posting in the Revimmune forum because the naysayers were making them feel bad. Needles to say they are doing much better now but they don't want to report anything because it will just be thrown back at them why it can't be permanent. I really don't want that to happen here because I care a great deal about how these folks are doing.



:)

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Postby LR1234 » Mon Jun 29, 2009 12:27 am

I will say that if no stenosis or refluxes are found in my system then as a CDMS patient one would have to assume that it is a result of MS and not a cause. So far I have no stenosis in my jugular veins but I am having the doppler done soon. I am interested to see if anything shows. I am sending my other scans to Dake for him to compare the jugulars with other patients who he has found stenosis in. Obviously for all our sakes I want abnormalities to be found....
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Re: LR1234 CTV tomorrow

Postby NHE » Mon Jun 29, 2009 12:35 am

chrishasms wrote:Just because the Tovaxin bubble burst please don't wreck peoples hope over here Bob.


I saw nothing wrong with what Bob posted. However, it appears that you may be asking people to accept that CCSVI is THE cause of MS on faith. Science is not a matter of faith. It has nothing at all to do with faith. In the scientific method, we take what we know, make a hypothesis about something we don't know, design an experiment or do some study to test that hypothesis, and then objectively look at the data to determine if our hypothesis was correct. If the data do not support the hypothesis, then the hypothesis may need revision (provided that the experiment or study and subsequent analysis were properly designed and carried out).

So what do we know about CCSVI and MS? We know that out of the multitudes of MS patients around the world that a small percentage have been found to have stenoses in their cerebrospinal veins (the vast majority remain untested). We know that in some MS patients, their "MS related" symptoms have decreased following surgery to correct the CCSVI stenoses. However, at this point, it is still a hypothesis that CCSVI has some etiological role in MS. The fact that a few people are reporting reduced "MS related" symptoms should make us hopeful. But at this point it realistically only tells us that we should continue exploring and testing the hypothesis. Fortunately, there are a small handful of doctors that are doing exactly that and testing that hypothesis, i.e., is there some association between cerebrospinal stenoses and MS.

To say at this point that CCSVI is THE cause of MS is much too premature. To ask that we accept it on faith is inappropriate. We will all benefit if we stay true to the scientific method and objectively review the data once it becomes available. One possibility is that there could be a phase III style study where there are 300 MS patients treated for cerebrospinal stenoses and 300 MS patients also with stenoses but not treated and then follow their disease course over a period of years. However, even then if it turns out that the MS patients treated for cerebrospinal stenoses are significantly better off then those that were untreated, we will still not know if cerebrospinal stenosis is THE cause of MS. All we would likely know is that alleviating CCSVI that occurs concurrently with MS is beneficial. In addition, it would likely be medically unethical to let people with cerebrospinal stenoses go untreated making such a study a bit complicated. I fear that short of tying up someone's jugular veins so that they were 90% restricted and then following them around for the next 10 years, we will still not have the answer to that question. Maybe we can get some nice "lab rats" somewhere to volunteer.

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Postby Sharon » Mon Jun 29, 2009 5:10 am

NHE wrote
One possibility is that there could be a phase III style study where there are 300 MS patients treated for cerebrospinal stenoses and 300 MS patients also with stenoses but not treated and then follow their disease course over a period of years. However, even then if it turns out that the MS patients treated for cerebrospinal stenoses are significantly better off then those that were untreated, we will still not know if cerebrospinal stenosis is THE cause of MS. All we would likely know is that alleviating CCSVI that occurs concurrently with MS is beneficial


The 4% of healthy, normal people who had one stenosis in Zamboni's research - what if they become CDMS in five years or ten years? Would be interesting to know if Zamboni will be following up with them.

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Postby cheerleader » Mon Jun 29, 2009 5:39 am

...and don't forget Dr. Marion Simka's 3 patients who were "suspected MS" that showed stenosis before their official MS diagnosis. He'll be following them in future papers. L...no need to wish for something you may not have, even in the name of science. This is all going to play out, independent of our personal "views." But our family is blessed and honored to be part of something that may be of service and benefit to others. And I am happy to see my husband active and energetic again. In my personal landscape, it all feels a bit miraculous.
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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