CCSVI theory vs Immune System Reboot

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

Postby LR1234 » Wed Jan 06, 2010 4:58 am

I am hoping/praying that Jacobs don't find CCSVI issues in the controls.
If they don't then that would be amazing:)

I think if a person with MS does not show CCSVI issues I reckon (just my opinion) that they should be tested for Hughes syndrome, haemochromatosis and Gluten intolerance,if those all come back normal then I think there is definately more to learn. I am hoping though that one of the above with show. in negative CCSVI patients
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Postby sbr487 » Wed Jan 06, 2010 8:22 am

cheerleader wrote:DRB1 1501 HLA seems to have a strong association with MS...but as to its affects in MS, jury's still out.

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cheer


Let me add my 2 cents here ...
Quite a bit of work has been done to isolate genes that might be associated with MS. But remember that this is just looking at the genes that are present in MS and not in normal persons. Not no one still knows if these genes then affect narrowing of veins or they are responsible the way immune system works in MS patients. On top of that, they have also found lot of cases where people with MS dont carry genes that are present in quite a few people with MS. I think finding the corelation between genes and MS is just the tip of the iceberg. I think if CCSVI turns out to be a success then the gene research for MS will definitely go into back burner. I mean who will back additional research for a diseaese for which cure is already available ...
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Postby Sotiris » Wed Jan 06, 2010 10:34 am

Leonard wrote:[...] Therefore, it is likely -in fact it is what you would expect- that people will be found with CCSVI (I guess mostly young people) that have not yet developed MS.

The prevalence of MS in the US population is about 0,13% (400.000 MSp/307 mill.).
According to a buffalo press release, the CTEVD/CCSVI study "will involve 1,600 adults and 100 children. The cohort will be comprised of 1,100 patients who were diagnosed with possible or definite MS, 300 age-and-sex matched normal controls, and 300 patients with other autoimmune and neurodegenerative diseases."
This means that even if the controls were randomly chosen (wich is not the case) and assuming that CCSVI is present in all MS patients and in no controls, the probability of finding no one with CCSVI in the control group of 600 people is about 45,8%.
If the probability of MS in the healthy group and in the patients with other diseases is about 10% of the probability of the general population (i.e. 0,013%), then the probability of finding no one with CCSVI in the control group is about 92,5%.
Concluding if our hypothesis about CCSVI holds true and due to the study design, it is not expected to find CCSVI in the control group.
Of course finding 1 or 2 individuals with CCSVI in the control group is not necessarily enough to reject the CCSVI hypothesis as it could be the case of people having not developed MS yet.
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Postby bestadmom » Wed Jan 06, 2010 10:39 am

I heard that the Buffalo study has found a few people with CCSVI who were in the control group, but upon further examination, they were then diagnosed as having MS. Symptoms hadn't presented yet, but the lesions and spinal tap confirmed diagnosis.
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Postby ozarkcanoer » Wed Jan 06, 2010 10:41 am

bestadmom,

What better confirmation of CCSVI and MS than finding controls with CCSVI who are then diagnosed with MS !! I wonder what the naysayers will have to say about this.

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Postby bestadmom » Wed Jan 06, 2010 10:46 am

OC,

I'm with you 100%. Don't forget Sharon's daughter had ms symptoms, didn't get a clinically definite diagnosis, but had stenosis. It all ties back in with the kids in Sardinia that Zamboni followed for 20 years.

If it proves true, it answers the chicken/egg question. I believe it does. I'm sure there are plenty of others here who will find flawed logic with that.

BAM
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Postby LR1234 » Wed Jan 06, 2010 10:57 am

I wrote this on another post but I had symptoms of MS for 14 years and was tested repeatedly with MRI's and LP's all negative.
My symptoms became stonger and finally last year I was diagnosed with CDMS (LP and MRI's all positive)

I definately have always had MS, my symptoms have never changed they have only become stronger but if i had been in the buffalo Study would I have been allowed to be a control???? I had no diagnosis only symptoms of unknown origin.

If I had been tested 2-13 years ago I would have been positive for stenosis with no MS diagnosis.
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Postby bestadmom » Wed Jan 06, 2010 11:20 am

LR1234,

I bet you wish you were tested 2+ years ago and we all knew about CCSVI then. It would have been proof positive.
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Postby cheerleader » Wed Jan 06, 2010 1:42 pm

bestadmom wrote:I heard that the Buffalo study has found a few people with CCSVI who were in the control group, but upon further examination, they were then diagnosed as having MS. Symptoms hadn't presented yet, but the lesions and spinal tap confirmed diagnosis.


True- Dr. Zivadinov talked about this in Bologna. The night before the conference, there was a more informal gathering with some of the docs. Dr, Zivadinov shared how one young woman came in to Jacobs as part of the control group and had stenosis. She then had the MRI and showed lesions. Three months later, she had her first MS flare, and became a clinically isolated MS patient, who laterhad another flare and received an official MS diagnosis. Dr. Dake then gave his experience with Sharon's daughter, finding her stenosis before the MRI showed lesions. Lots of papers coming on all of this, to be sure-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Leonard » Thu Jan 07, 2010 1:59 am

cheerleader wrote: Lots of papers coming on all of this, to be sure-
cheer


Absolutely, Zamboni expects 10,000 papers over the next 10 years. But as MS patients, we can not and should not have to wait until every little detail is known. If we would start to build our world only after we researched everything, we would still be living in the stone-age.

The issue is how plausible is the CCSVI theory. I believe the story hereabove adds to an already overwhelming pile of evidences found.

I am from Europe. I know for fact that many in Europe and in all corners are looking to the MS Society in the US. What is their position? Have they been confronted with this information?

cheers,
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Postby Leonard » Thu Jan 07, 2010 2:00 am

cheerleader wrote: Lots of papers coming on all of this, to be sure-
cheer


Absolutely, Zamboni expects 10,000 papers over the next 10 years. But as MS patients, we can not and should not have to wait until every little detail is known. If we would start to build our world only after we researched everything, we would still be living in the stone-age.

The issue is how plausible is the CCSVI theory. I believe the story hereabove adds to an already overwhelming pile of evidences found.

I am from Europe. I know for fact that many in Europe and in all corners are looking to the MS Society in the US. What is their position? Have they been confronted with this information?

cheers,
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