This Is MS Multiple Sclerosis Community: Knowledge & Support

Over the past months I have seen many people saying all the healthy controls in the Buffalo work were family members. This is not correct.
The real data, excluding the 18 borderline people, consist of a total of 145 healthy controls. Of these, 101 were non family members and 44 were family members. This was done to see if family members were more likely to have CCSVI.
The results were 13/44 (30%) of family members had CCSVI and 24 of 101 (24%) of non family members had CCSVI. The total for all healthy controls was 37/145 with CCSVI (25.5%).
For those worried about the borderlines it was 4/44 (9%) for the family members and 14/101 (14%) for the non family members so these numbers would not change the comparison between the two groups.
The bottom line is healthy family members have a slightly higher chance of CCSVI than healthy non family members. Note the same operator did all testing so that cancels out any operator problems in terms of the comparison. It of course still exists for the absolute numbers.

The MRV and Doppler are very limited in the scope of diagnosing CCSVI. I have talked with others that have gone to Buffalo and Albany.

At Jacobs, they would find only one criteria of Dr. Zamboni's five. It takes two for a diagnosis of CCSVI. Some would have two or more.

Then having a catheter venography done at Albany, they would have more than 80% of the people diagnosed with CCSVI.

Again, Catheter Venography, with a seasoned Radiologist is the Gold Standard for Diagnosis and treatment.

Thanks for clearing up this issue !

ozarkcanoer

I agree with the comment that Doppler has a limited range. In addition the 25 % that had CCSVI in my mind, just do not have MS yet... They have a ticking time bomb.

My opinion is that the ticking time bomb analogy is a possibility.

We won't know for 10 years or so.

However as was said, CCSVI is nothing to be complacent about.

Reflux of venous blood into the brain, and the hypoxia caused by slowed transit of blood through the brain are happening in CCSVI, whether you are 'healthy' or not. Spurious iron deposits are probably happening.

The harmful consequences of the venous malformations of CCSVI can, and will, be demonstrated and quantified.

The prevalence of CCSVI, depending on how convinced you are of the Buffalo data, seems to be much higher than the presence of 'MS' in the general population. That may mean there is an additional factor besides CCSVI that triggers 'MS'. Or it may not. I think genes are behind it either way. CCSVI is congenital.

The natural history of CCSVI is unknown, and status as a healthy person sounds on the surface as if it may not be threatened by a diagnosis of CCSVI.

However, it is difficult to imagine the mechanisms of CCSVI, causing reflux, slowed transition of blood through the brain and spine, and lowering of its oxygen levels, whether they are intermittent and posture-dependant or not, being indefinitely tolerated by healthy people. Having seen the "before" videos, I think if I had a diagnosis of CCSVI and was otherwise healthy I would worry, and might even seek treatment. I have several siblings, with various auto-immune problems who may do that.

That CCSVI may be prevalent outside the 'MS' population, should not be a consideration, for people with CCSVI formerly diagnosed as 'MS'. That Drs. Zamboni and Zivadinov had differing, though compatible results means, to me, that some of the results obtained by Dr. Zivadinov and possibly by Dr. Zamboni as well, must be reproduced by other researchers. Fortunately trials are already underway.

In the meantime, though, no-one need wait for more research, to have the state of their own health examined, and corrected. Liberation not only works, it saves lives. There may someday soon be something even better, but for now Liberation is the best we have.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Thanks Direct-MS for this info.

I wish Buffalo release properly their findings. We have been given just a gllimpse. That leads to speculation of how many were actually family members and what sort of conditions were tested apart from MS. It seems that there were CIS, hashimoto, epilepsy, neurosarcoidosis, Devic's and 'others'...Hmmm

Rox

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Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.

25% of all healthy controls had CCSVI.
That's every 4th adult person.
They need treatment to.
It's huge epidemic!
If every 4th adult person feel fatique (as I feel) as a direct result of CCSVI, thats realy bad and goverments must be deeply concerned.

Choosing people without MS as the healthy controls for MS trials is not logical. Think about the basics of MS - it has an underlying genetic predesposition which is yet to be fully understood and documented. As a minimum healthy controls should be genetically tested to exclude subjects with genes, which may lead to development of MS. More cost I know, when we are still asking do pwMS have restricted veins.
MS is a truly complex disease.....................
Kind regards,
MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

As far as I know, no gene has been isolated that points conclusively towards MS. Worse still, most of the study was looking for genes responsible for immune regulation, while per CCSVI, you will not find issues with those genes.

But hey, this is all a learning phase. Who knew that even healthy people can have CCSVI before this.

Interesting times ahead ...

_________________
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck

Actually, that's not true. According to a new study, the copy number variations located in the HLA locus chromosome 6p21.32 --the locus which is already studied and found related to MS--also contain CNVs for venous malformations found in CCSVI.


http://www.fondazionehilarescere.org/pd ... -final.pdf

I agree with Mark W 100%---Whether or not "normals" have CCSVI is not the issue. We see predispositions to heart disease, carotid artery disease, and stroke in many "normals" as it relates to elevated C-Reactive protein and carotid artery luminal thickening, yet they do not develop full-blown stroke or heart attacks. Some have transient ischemic attacks that happen once and never return (benign arterial conditions) Yes, there are environmental issues involved in developing stroke and heart attack--BUT THAT DOES NOT PRECLUDE these patients from having their carotid arteries or heart treated with angioplasty, and then being put on special medications, diet and exercise programs.

I'm afraid is we go round and round regarding who has CCSVI, and if we find it in some "normals", we miss the forest for the trees. People already have MS...they need help now, and need to have their venous issues addressed.

cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Well stated!

Cheer wrote

As always Cheer says it as it is.

Thanks Cheer for your comments. My replies tend to be terse, currently I post mainly to educate not argue. You are much more gentle.

Groups of genes (not single genes) interact with each other and environmental factors and eventually we get MS. The more I consider these interactions and where restricted veins fit into the picture, the more I think that we should be de-stenosing veins and not trying to explain why it works for many pwMS (but not all).

That's my thought for today,
MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

Cheer, the context in which the comment was made, I felt Mark did not mean to rely on this study you have pointed out. Do you really think one can rely on such preliminary study to decide on another which is itself so preliminary?

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A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck

There are many papers on genes and MS. As a starting point follow Prof Ebers, Oxford Uni.
Kind regards,
MarkW

_________________
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html