Only 55% for buffalo study?

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

Postby Cece » Wed Feb 10, 2010 8:04 pm

Wichita wrote:This tidbit was reported in the Canadian Press:

The researchers also found fewer cases of CCSVI in patients who had experienced a single MS attack, called clinically isolated syndrome, compared to those with more advanced symptoms of the disease -38 per cent versus about 80 per cent.


Thank you for posting this! This is much more encouraging. How very interesting...and it points to the possibility of CCSVI worsening over time, thereby causing more advanced symptoms, does it not? Or could it be interpreted differently?
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby TFau » Wed Feb 10, 2010 8:09 pm

I wonder if this is really what the Buffalo researchers were excited about and why they are going to correlate findings with progression - they did say that, didn't they?
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Postby TFau » Wed Feb 10, 2010 8:15 pm

From Canada Press
"The researchers also found fewer cases of CCSVI in patients who had experienced a single MS attack, called clinically isolated syndrome, compared to those with more advanced symptoms of the disease -38 per cent versus about 80 per cent.

Zivadinov, head of the Buffalo Neuroimaging Analysis Center at Buffalo General Hospital, said this suggests CCSVI could be linked to progression of MS. But he conceded his data do not offer proof of progression because the study looked at individual patients at only one point in time. A subsequent study is planned that would follow patients over time to see if venous insufficiency advances as their disease worsens."

I guess they will look at that - but that seems to be a quite unethical study.
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Postby sou » Wed Feb 10, 2010 8:21 pm

Direct-MS wrote:It would appear the most reasonable model is MS is primarily an autoimmune disease as the genetic and a lot of other data have indicated and that having CCSVI is a major risk factor for MS. Thus if you are susceptible to CNS autoimmunity and have CCSVI your chance of contracting clinical MS is much higher than the person who is only genetically susceptible to CNS autoimmunity.


What exactly makes autoimmunity reasonable? The lack of T lymphocytes during the genesis of the lesions? The fact that we are still looking for that
MS autoantigen 150 years later? The fact that MS loves "eating" myelin around the ventricles? The fact that it progresses normally on people suffering from AIDS?

Autoimmunity is based on hypotheses that have lead to an inadequate animal model and, generally, ineffective drugs. If CCSVI is not proven causative in any way, it does not mean that MS is autoimmune. It is still of unknown origin. Let us wait for the official data before drawing conclusions.

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Postby Cece » Wed Feb 10, 2010 8:21 pm

TFau wrote:I guess they will look at that - but that seems to be a quite unethical study.


I have to agree too. With-holding treatment while watching while disease worsens...I will not be signing up for that one.
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Postby sonia52 » Wed Feb 10, 2010 8:30 pm

This morning, the Canadian TV station aired this piece of news :

http://www.healthzone.ca/health/newsfea ... f-ms-study

In the third paragraph of the written text :

"Using Doppler scan ultrasounds and MRIs, researchers at The Buffalo Neuroimaging Analysis Center analyzed the veins of 500 adults and children. The group included patients with MS, clinically isolated syndrome (a condition that is sometimes an early indicator of MS), other neurologic diseases, and healthy patients. "

Are people with "other neurologic diseases" included in the healthy patients percentage? I suppose so. Then, maybe some of them have CCSVI too. And if so, it would be interesting to know which neurologic diseases they have.

I have read somewhere today that some healthy patients included in the Buffalo study had MS patients in their immediate family, but tonight I'm not able to find where it was. Would somebody have read this too?
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Postby TFau » Wed Feb 10, 2010 8:35 pm

sonia52 wrote:I have read somewhere today that some healthy patients included in the Buffalo study had MS patients in their immediate family, but tonight I'm not able to find where it was. Would somebody have read this too?


Hi Sonia:

I read this too, but I think that someone was just speculating in another thread that volunteers for the control group would most likely be close to a PwMS. Maybe it was said somewhere else too.

I like your comment about which category the people with other neurological diseases went. I wondered that too.
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Postby L » Wed Feb 10, 2010 8:58 pm

Cece wrote:
Wichita wrote:This tidbit was reported in the Canadian Press:

The researchers also found fewer cases of CCSVI in patients who had experienced a single MS attack, called clinically isolated syndrome, compared to those with more advanced symptoms of the disease -38 per cent versus about 80 per cent.


Thank you for posting this! This is much more encouraging. How very interesting...and it points to the possibility of CCSVI worsening over time, thereby causing more advanced symptoms, does it not? Or could it be interpreted differently?


You're right Cece, is that a sign that CCSVI worsens over time or that more severe CCSVI would lead to faster progression? Unfortunately only a very long term study could answer that question.. It would be great to know if there was a marked difference in the seriousness of the CCSVI condition in different MS-severity groups. But surely that information will follow?
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Postby cheerleader » Wed Feb 10, 2010 9:06 pm

L wrote:You're right Cece, is that a sign that CCSVI worsens over time or that more severe CCSVI would lead to faster progression? Unfortunately only a very long term study could answer that question.. It would be great to know if there was a marked difference in the seriousness of the CCSVI condition in different MS-severity groups. But surely that information will follow?


Actually, Dr. Zamboni addressed this in his first paper, where he described four specific patterns of stenosis as related to RRMS, SPMS and PPMS. The primary progressive patients had the most serious reflux damaging the spine, and in some cases, were missing veins along the spine completely. RRMS typically had one blocked jugular, and those with two often switched to progressive. My husband had two blocked jugulars, one at 95% and one at 80%. He was headed to progressive- he had lost his peripheral vision as a child, had other MS symptoms, but wasn't diagnosed until his first big flare in his forties.
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Last edited by cheerleader on Wed Feb 10, 2010 9:07 pm, edited 1 time in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby jr5646 » Wed Feb 10, 2010 9:06 pm

Not sure now if I want to shell out $4500 to test for ccsvi at Buffalo with at a 45% chance of finding nothing... pretty lousy odds. Wondering how the hell Zamboni, Dake and Simka found much higher rates?

Then again, since the dx of ms is so difficult to pin down, I'm wondering how many tested neg. for ccsvi and did not really have ms to begin with? Or what of the poor "normal controls" who tested positive... will they progress to a ms dx? I remember reading once that lesions were found in some folks as "naturally occuring" from birth. Does this account for some of the CIS pt's?

This is all bringing up more questions and doubt for sure and bumming me out...
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Postby TFau » Wed Feb 10, 2010 9:15 pm

cheerleader wrote:
L wrote:You're right Cece, is that a sign that CCSVI worsens over time or that more severe CCSVI would lead to faster progression? Unfortunately only a very long term study could answer that question.. It would be great to know if there was a marked difference in the seriousness of the CCSVI condition in different MS-severity groups. But surely that information will follow?


Actually, Dr. Zamboni addressed this in his first paper, where he described four specific patterns of stenosis as related to RRMS, SPMS and PPMS. The primary progressive patients had the most serious reflux damaging the spine, and in some cases, were missing veins along the spine completely. RRMS typically had one blocked jugular, and those with two often switched to progressive. My husband had two blocked jugulars, one at 95% and one at 80%. He was headed to progressive- he had lost his peripheral vision as a child, had other MS symptoms, but wasn't diagnosed until his first big flare in his forties.
cheer


But having PPMS doesn't always mean that you have severe disease. My husband has just started using a cane and works full time - he was diagnosed with PPMS 12 years ago. I don't know if there are any statistics re progression rates in PPMSers, but I don't think my husband's slow progression is that unusual.

So, maybe the pattern of stenosis indicates the character and the severity of the stenosis indicates the progression.
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Postby beerduff » Wed Feb 10, 2010 9:20 pm

sonia52 wrote:This morning, the Canadian TV station aired this piece of news :

http://www.healthzone.ca/health/newsfea ... f-ms-study

In the third paragraph of the written text :

"Using Doppler scan ultrasounds and MRIs, researchers at The Buffalo Neuroimaging Analysis Center analyzed the veins of 500 adults and children. The group included patients with MS, clinically isolated syndrome (a condition that is sometimes an early indicator of MS), other neurologic diseases, and healthy patients. "

Are people with "other neurologic diseases" included in the healthy patients percentage? I suppose so. Then, maybe some of them have CCSVI too. And if so, it would be interesting to know which neurologic diseases they have.

I have read somewhere today that some healthy patients included in the Buffalo study had MS patients in their immediate family, but tonight I'm not able to find where it was. Would somebody have read this too?



During the first phase of the research attempts were made at developing non-invasive techniques to functionally explore the cerebral veins.
In a subsequent phase, several diseases of the central nervous system (Alzheimer’s disease, Parkinson’s disease, ALS, Multiple Sclerosis, etc…) were compared to the conditions of (healthy) control individuals.
It turned out immediately that venous functioning in all these diseases was absolutely comparable to that of healthy subjects, while in all MS patients there was marked chronic cerebro-spinal venous insufficiency (CCSVI).
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Postby TFau » Wed Feb 10, 2010 9:36 pm

Thank you Beerduff. Can you tell us where you got your information?

Theresa
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Postby beerduff » Wed Feb 10, 2010 9:49 pm

TFau wrote:Thank you Beerduff. Can you tell us where you got your information?

Theresa

Sorry should have included the link
http://www.fondazionehilarescere.org/eng
Click: press area.
Click: The discovery of CCSVI
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Postby Billmeik » Thu Feb 11, 2010 1:36 am

anybody else have troubles with some of this wording? If you exlude the 12% borderline cases it brings the total to 62%. I think they mean if you include.

also 55 plust 12 is 67 isn't it?
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