CCSVI not associated with HLA DRB1*1501 status?

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

Postby cheerleader » Thu Feb 17, 2011 10:31 pm

Thanks for the input, patient. Appreciate it.

Additionally, CCSVI positivity appeared associated with progressive forms of MS but we did not obtain evidence that HLA DRB1*1501 positivity was associated with progressive forms of MS in our sample. The exact reasons for the associations between CCSVI and progressive forms of MS are not known: only prospective longitudinal studies can address whether the associations are the result of CCSVI modifying disease progression or alternatively, because CCSVI is secondary to the underlying inflammatory/degenerative disease processes.


Here's a thought on this topic. Progressive MS, as opposed to RRMS, tends to be less about immune attacks on white matter, and more about neurodegeneration. Since HLA DRB1 1501 is an immune reactive allele, perhaps this partially explains the lack of connection in progressive MS.

Today a Canadian woman and her son were treated for CCSVI in California. Sandra's son had not been diagnosed with MS, but was showing mild neurological impairment and spasms. His doctor said "likely MS." He came with his Mom, was tested and shown to have reflux and CCSVI. And our Alliance president, Sharon, brought both her daughters to be tested for CCSVI at Stanford. One had perfect veins. (Dr. Dake called them a relief---after all the mangled veins he'd seen.) The other, who had been having mild neurological issues, was shown to have reflux and white matter lesions on MRI, yet no MS diagnosis. Yes, these are anecdotal, but every day I hear tales across the globe of young CIS and pre-MS dx patients with CCSVI. But, these studies are yet to be published...and the neurological journals are whipping these papers out. It's disheartening. Hope that explains my over-reaction,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby dreddk » Thu Feb 17, 2011 10:45 pm

Interesting patientx....given the natural history of ms it seems peculiar that there is no association between the HLA and progressive MS. Perhaps its an anomaly in this sample.

With respect to association of ccsvi and progressive ms this seems to support the conclusion of the beirut study that ms is more prevalent in long term msers (which is perhaps a more interesting definition to study than trying to categorize msers as progressive).

Cheer, were these pre CIS patients diagnosed with venography or other? Its just it appears that you have around a 25% chance of being diagnosed with ccsvi for non-venography testing so the likelihood of ones children testing positive would be very high indeed.
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Postby cheerleader » Thu Feb 17, 2011 11:03 pm

dreddk wrote:Cheer, were these pre CIS patients diagnosed with venography or other? Its just it appears that you have around a 25% chance of being diagnosed with ccsvi for non-venography testing so the likelihood of ones children testing positive would be very high indeed.


One was MRV followed by venography, one was doppler then venography. Dr. Zivadinov had one he spoke about in Bologna. A family member ("normal" daughter) who showed CCSVI on doppler, then presented with MS lesions on MRI and a CIS dx 3 months later. They're out there, just not in published studies. argh.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby muse » Thu Feb 17, 2011 11:47 pm

cheerleader wrote: Why does the abstract take such a negative stance, when the full paper is much more neutral? That's my question. The Buffalo doctors wrote the paper....who wrote the abstract? I don't think it was the same author.
Did the editor write the abstract? Editor: Christoph Kleinschnitz, Julius-Maximilians-Universität Würzburg, Germany
Here's the full paper, see if you think the abstract is a bit more negative, patient. Am interested in your take on this--
http://www.plosone.org/article/info:doi ... ne.0016802
Or, I could be completely over-reacting...(but I don't think so)
cheer


OMG Joan – MR. Christoph Kleinschnitz = a well known member of the MSSOC (adviser board DMSG) & with strong ties to the University of Wuerzburg (google "Georg Schaltenbrand"), Germany.
In 2009 I had some arguments about CCSVI etc. with him in public.
Best
Arne

Christoph Kleinschnitz received honoraria for lecturing and travel expenses for attending meetings from Biogen Idec/Elan, Bayer Healthcare/Bayer Vital, Merck Serono, Boehringer Ingelheim and Sanofi-Aventis and serves as a consultant for Merck Serono. Sven G Meuth received honoraria for lecturing and travel expenses for attending meetings from Bayer Healthcare/Bayer Vital and Merck Serono and serves as a consultant for Merck Serono. http://www.msforum.net/Site/ViewPDF/Vie ... pe=Article The trials and errors in MS therapy. Int MS J. 2008 Sep;15(3):79-90. http://preview.tinyurl.com/4lyeyye
"MS" doesn't exist! - CCSVI dx Nov.2009, 1. angio LVJ & RVJ June 2010, 2. angio RVJ April 2011, January 2012 2. restenosis, reversed after ~1 year intake of high dosage Magnesium only. ThisIsCCSVIinMS: http://tinyurl.com/nwy5x58
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Postby MrSuccess » Thu Feb 17, 2011 11:56 pm

sure is getting hard to hide '' the kid's you play with '' ...... thanks to the Internet .

Figure out how they can keep their vig from Big Pharma ..... and they will have no problem accepting CCSVI .

that's how the world works :twisted:





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Postby MegansMom » Fri Feb 18, 2011 2:15 pm

This Title and Abstract are very misleading and conclude things that are not factual.


My take on the results are that its similar to the BRCA genes ( BRCA1 & BRCA2) and Breast Cancer.

The BRCA gene mutations are found in only a small segment (2%) women. Its also found in non breast cancer females. Having it means you are more likely to get Breast cancer in you life than most. Is it a guarantee........no.

Only a small segment ( 10%)of women with Breast cancer have the BRCA gene mutation.

So according to the article the same holds true for MS AND for CCSV and even for some folks that have neither.

The Title is extremely misleading.
Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Postby linsand » Sat Feb 19, 2011 1:42 pm

Talk about wanting to confuse, if you wanted to do that this article must be one of the best.

Chronic Cerebrospinal Vascular Insufficiency Is Not Associated with HLA DRB1*1501 Status in Multiple Sclerosis Patients


Very interesting;
"The odds ratio for the association of CCSVI with MS was 4.52 compared to the odds ratio of 2.33 for the association of HLA DRB1*1501 with MS."
The odds ratio describes the strength of association
To me this means that CCSVI has a stronger link to MS, and HLA DRB1*1501. a weaker link to MS when the two are compared.

This is good news for those of us who support and follow CCSVI's associaton to MS because the data actually support that, the association of HLA DRB1*1501 scientifically to MS is dubious.

Please correct me if my interpretation is incorrect.
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Postby patientx » Sat Feb 19, 2011 5:04 pm

dreddk wrote:Interesting patientx....given the natural history of ms it seems peculiar that there is no association between the HLA and progressive MS. Perhaps its an anomaly in this sample.

With respect to association of ccsvi and progressive ms this seems to support the conclusion of the beirut study that ms is more prevalent in long term msers (which is perhaps a more interesting definition to study than trying to categorize msers as progressive).

Cheer, were these pre CIS patients diagnosed with venography or other? Its just it appears that you have around a 25% chance of being diagnosed with ccsvi for non-venography testing so the likelihood of ones children testing positive would be very high indeed.

Actually, I had posted that quote more for the part about progressive MS and CCSVI, since this went along with what you were saying about stenoses being a result of MS.
Much of the genetics stuff went over my head. Genetics in general seems to be to be a very complicated science, and one that I am not going to get a thorough understanding from reading the internet.
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Postby Cece » Sat Feb 19, 2011 5:11 pm

linsand wrote:Talk about wanting to confuse, if you wanted to do that this article must be one of the best.

Chronic Cerebrospinal Vascular Insufficiency Is Not Associated with HLA DRB1*1501 Status in Multiple Sclerosis Patients


Very interesting;
"The odds ratio for the association of CCSVI with MS was 4.52 compared to the odds ratio of 2.33 for the association of HLA DRB1*1501 with MS."
The odds ratio describes the strength of association
To me this means that CCSVI has a stronger link to MS, and HLA DRB1*1501. a weaker link to MS when the two are compared.

This is good news for those of us who support and follow CCSVI's associaton to MS because the data actually support that, the association of HLA DRB1*1501 scientifically to MS is dubious.

Please correct me if my interpretation is incorrect.

I think you are correct.
I can sometimes follow the genetics talk but this article was more challenging than usual.
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Postby patientx » Sat Feb 19, 2011 5:18 pm

cheerleader wrote: Today a Canadian woman and her son were treated for CCSVI in California. Sandra's son had not been diagnosed with MS, but was showing mild neurological impairment and spasms. His doctor said "likely MS." He came with his Mom, was tested and shown to have reflux and CCSVI. And our Alliance president, Sharon, brought both her daughters to be tested for CCSVI at Stanford. One had perfect veins. (Dr. Dake called them a relief---after all the mangled veins he'd seen.) The other, who had been having mild neurological issues, was shown to have reflux and white matter lesions on MRI, yet no MS diagnosis. Yes, these are anecdotal, but every day I hear tales across the globe of young CIS and pre-MS dx patients with CCSVI. But, these studies are yet to be published

Out of curiosity, was the reflux in that case shown through an ultrasound examination? If so, where was it done?

I can't comment on those tales, since I have not heard them. But you'll have to forgive some people if they don't put their full trust in stories heard over the internet.

...and the neurological journals are whipping these papers out. It's disheartening. Hope that explains my over-reaction,
cheer

Again, just for clarification, do you mean the article that started this thread.? If so, you may be interested in what this PLoS one is all about (not that I ever heard about it before this).
http://www.plosone.org/static/information.action
PLoS ONE features reports of original research from all disciplines within science and medicine. By not excluding papers on the basis of subject area, PLoS ONE facilitates the discovery of the connections between papers whether within or between disciplines.


But, to be honest, I think the article we've been discussing is pretty useless. I really don't like statistics when it comes to medicine - I'm sure I'm like most people here who would rather researchers tell us what causes MS and why and what to do about it.
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Postby Cece » Wed Feb 23, 2011 7:02 pm

Came across an article on this research, same as what's here, but I hadn't noticed that it was Univ of Alabama -Birmingham doing the analysis, using the data from Dr. Zivadinov's team at BNAC.

http://www.examiner.com/science-news-in ... osis-cause

Some of the conclusions (this may be rehashing what has already been said):
MS and CCSVI are associated, to at least 56% and higher in the progressive group at 69%, compared to 21% in the controls. This was through ultrasound screening.

CCSVI and HLA DRB1*1501 are associated, to at least 27% and higher in the progresive group at 40%, compared to 8% in the controls.

MS and HLA DRB1*1501 are associated at 51%, compared to 31% in the controls.

The following statement, "The presence of CCSVI was independent of HLA DRB1*1501 status in MS patients," is what gave the article its title.

The way I make sense of this is that CCSVI sets the stage for MS. It is a "promoter," possibly even a requirement. Once the cascade of bodily responses to the cerebral reflux and deoxygenation begins, having the HLA DRB1*1501 is a strike against the pwCCSVI because it means a genetic predisposition to having a stronger immune reaction against the dead/dying/deoxygenated/iron-laden/starving oligodendrocytes and neurons. HLA DRB1*1501 does not make it more likely that you will have CCSVI, but it does add (brain) insult to (brain) injury and make MS more likely.

I also disagree with the findings that CCSVI is only present in 56 - 69% of people with MS. Clinical evidence using the gold standard catheter venogram supports a figure closer to 95% or higher. If you consider the 56 -69% a mismeasurement, conclusions drawn from that data are also inaccurate.
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One of the authors...

Postby ladywise » Sat Feb 26, 2011 5:06 pm

The involvement of Dr. Cutter, the statistician on this particular study and for this paper, makes me seriously question the results of any study he participates in: https://www.facebook.com/note.php?note_ ... 0796282297
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