This Is MS Multiple Sclerosis Community: Knowledge & Support

Actually, many of the "healthy controls" in the Buffalo study were family members of people with MS. It has been suggested that this may be part of the reason for such a high percentage of CCSVI in the control group.

.. but but but ...if this is true?? .. please tell me they kept family stats seperate from non-family..

I have heard this also...........makes you wonder what the testing is going to be like this time.....

I wrote this, and I stand by it. Dr. Zivadinov said this at the AAN conference webinar (that the healthy controls group included blood relatives of MS patients, as well as those with other autoimmune diseases), and he mentioned it last September at the Bologna conference dinner...he told the story of a young woman who was tested as a healthy control. She was the blood relative of an MS patient, and showed CCSVI. Three months later she has an MS diagnosis.

I do not know why this hasn't been addressed, perhaps it will be in the published research. But I do not see how blood family members can be considered healthy controls in a potentially genetic disease. The family members and other autoimmune diseases should be separated from "healthy" controls. just my non-medical opinion-
cheer

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

That doesn't explain why they found only 56% of CCSVI. They shouldn't have he right protocol. It made no sense.

Watch the webinar--here is the link.

link

Dr. Zivadinov shows up around 30 minutes in....
34:55 shows how the groups were broken up-
for the full 1700 subjects will include:
300 healthy controls and family controls is one group
150 autoimmune/vascular disorders

Dr. Zivadinov explains that they did not use the transcranial doppler for everyone--125 did not have it due to "technical difficulties" (see 37:11)
--their study was not as complete. (FYI-if my husband had been tested at BNAC w/no TCD- he would not have had CCSVI.) They also did not use the gold standard venography. Borderlines were considered negative.

At 40 minutes he explains the familial healthy controls....
163 "normals"---115 non-family, 48 were blood connections to MS patients.

I suggest everyone watch this- take from it what you will...this is a work in progress.
cheer

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

...and now i fear that the Buffalo results will have too many inconsistencies only to be challenged and hold things up even longer.. aaaarrrgh.. the money being frittered away is going to eclipse the costs of diagnosis and treatment.
Pens in hands.. fingers on keyboards.. voices raised..

“Nothing that I can do will change the structure of the universe. But maybe, by raising my voice I can help the greatest of all causes - goodwill among men and peace on earth.”
Albert Einstein

Actually, PC...one thing the BNAC study showed was direct correlation with severity of MS and severity of CCSVI. The progressive patients had CCSVI 70% of the time. And at the beginning, Dr. Zamboni talks about how when gold standard venography is employed, CCSVI is found in 90-100% of all MS patients. Watch the whole video. It's very interesting.
cheer

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

I believe that number is now up to over 62%. Zivadinov said that they were not using trans-cranial Doppler, and so, were not using Zamboni's protocol per se. Further, there is a co-relation between the experience of the operator, and the diagnosis. This was shown at False Creek, where they were only having a 25% "success" rate until Simka showed them the ropes. (pun unintended) Even though the operator is an admitted skeptic, the diagnosis of CCSVI is now over 80%, I believe.

I find it very curious too, that BNAC considered blood relatives as healthy controls. And to the other neurological diseases, iron is there in the brain of Alzheimer's patients, and Parkinson's, so perhaps CCSVI is an indicator for those diseases too (or vice verso).

I have thought that there is something else to the BNAC study than CCSVI, and I can't pin it down. Perhaps it is too broad in scope, or lacks direction, I just don't know. There is something about the Slavic mind-set that confounds me - perhaps that Zivadinov seems to have such is part of my feeling. (I have no judgment of that mind-set, just curiosity.)

The numbers keep going up as BNAC moves along, and we must keep in mind that the study is not complete.

_________________
My name is not really Johnson. MSed up since 1993

I have switched gears, out of frustration, by taking this to other interest groups.. CNIB.. Meniere's Society.. physio's.. any/ all I can think of that would have a reason to listen without a reason to object..

will do and, respectfully, thank you for the link..

"..the BNAC study showed was direct correlation with severity of MS and severity of CCSVI. The progressive patients had CCSVI 70% of the time..."
and i, with a somewhat benign course, tested positive for CCSVI with no stenosis.. this seems so clear.. so so clear

Hi - the above mentioned link is from the presentation on the 14th of april - is it not?

I hope the presentation on the 30th of april (yesterday) which I have not yet seen a webcast from is more positive.

christian

_________________
RRMS Dx'd 2009

If you watch the web presentation on aan, it is all on there.

They used non invasive examination only. The non evasive examination can only give an indication of ccsvi, or no ccsvi, and not give a final diagnosis.

Dr. Zivadinov commented on that it is quite likely that the results in Buffalo would be more inkeeping with the Italian study if venogram had been used. They would then probably get a higher occuranse of ccsvi in the ms group, and they would probably find that the quite a few of the healthy controls indicating ccsvi, would be cleared with further examination. And further that the likelyhood of ccsvi in controlgroup would mainly be found in the relatives of ms patients, and the part of the control group with other diseases.

I read on here that preliminary results of the studies from Kuwait are ready, and that they are in line with Dr. Zivadinov prediction of Buffalo study if venogram had been used.

_________________
<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>

There seems to be a misunderstanding of statistical data belonging to a slow, chronic condition.
I think, that is the origin for many useless disputes.

One should understand this analogy (again):
Lung cancer patients: about 85% smokers.
Healthy controls: 25% smokers.

There are millions and millions of healthy smokers. BUT if no one would smoke, MOST cases of lung cancer would disappear.

That is no proof, but the data of Dr. Zivadinov is good enough for a similar situation.

For a chronic condition the disease MAY develop (some extra factors?), but without the condition the small probability is lowered by a large factor.

Using Dr. Zivadinov data, there is a chance, that roughly half of all MS patients may benefit from a CCSVI treatment (my educated guess).

R.