This Is MS Multiple Sclerosis Community: Knowledge & Support

http://www.springerlink.com/content/u492178480r30984/

Abstract is english and german, full text is german only.

The names on this paper are identical to the ones that signed the statement of the german MS society...

_________________
"There is only one good, knowledge, and one evil, ignorance." Socrates

Krogias - Neurologist
Schröder - Neurologist (not absolutely sure, very common name)
Wiendl - Neuroimmunologist
Hohlfeld - Neuroimmunologist
Gold - Neurologist

_________________
"There is only one good, knowledge, and one evil, ignorance." Socrates

ignore them. These are the guys who said "valueless" first and then they say ccsvi is not so relevant. What next? upping the relevance by 5%?

I figured it out. This is like college where we first drew the trend and then extracted the readings. They wrote the abstract and the conclusion first and then they started the actual study ....

It would be very helpful if we could get a translation of this paper. It is important to be able to evaluate the data and interpretations of all research efforts done on CCSVI.
To ignore such work brings us down to the bottom-feeding level of the neurological community which patently ignored Dr Zamboni's work for 3 years until the CTV documentary forced them to have to deal with it in a scientific fashion. Of course now that the neurological community can no longer ignore it, they are trying hard to discredit it.
I am curious to see the scientific level of this latest effort to dismiss CCSVI and to prevent testing and treatment.

Could not agree more and could not have said it better.

Please, be open minded to all research. Draw your own conclusions afterwards, but give everything an open and honest review. Without the full article available, nothing can really be said about what is being presented here.

I agree with you. Ignoring wouldn't make us any better then those naysayers. Instead, we should question their seriousness. To me, a big point is that there was no vascular surgeon, radiologist or anyone like that involved.

I see what I can do in terms of an translation. (Don't have the full text by now)

_________________
"There is only one good, knowledge, and one evil, ignorance." Socrates

I don't see an outright dismissal, and in fact, sympathise with this statement:, only in that we do not yet know the exact causation of vascular stenosis in CCSVI. It has been posited, and indeed, agreed upon by phlebologist society that the strictures are congenital, and in fact are initiated in the 3d month of gestation. This does not account for all of the different presentations of CCSVI, or MS. Dr. Sclafani has suggested that what he saw in my MRV pics, could be caused by pathology lower down - like brachio-cephalic plexus, or such. Then there is Vena Cava Syndrome, azygos involvement, that spirochetes (Lyme disease, syphilis) have an affinity for the endothelium. Could it be that spirochetes attack the venoules in the brain, that later trigger jugular, and other stenoses?

There is much undiscovered about this. That is the realm of research involving immunology, endocrinology, phlebology, neurology, and so on. In the interim, there is so much anecdotal evidence that relieving the stenoses relieves the symptoms, how can we be denied?. That is our concentration, and it is moving forward regardless of those in doubt.

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

I am curious to read if these researchers followed Dr. Zamboni's doppler and transcranial doppler ultrasound protocol? We'll need the full paper to see what scanning technique these doctors utilized.

I've said this before, Jeff's doppler was unable to reach up behind his ears, where his jugular stenosis was later discovered on MRV. Stanford did not have transcranial doppler technology available. And of course, it was only upon venogram (the gold standard testing which is detecting 90-100% of MS patients with CCSVI around the globe) that the true nature of his venous reflux was uncovered.

If anyone is able to get the entire paper--please post.
thanks,
cheer

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

If this war their only statement, it would be ok. But the don't stop there. Here's the complete abstract:



So let's sum this up. Exactly the same neuros that stated that Zamboni's work was "valueless and even ethically questionable" did their own research. As far as I know by now (haven't read the full text, trying to get it), they studied 17 PwMS. No blinding, no controls are mentioned. No vascular expert was involved. They only did sonography. Yet they not only draw their conclusions, but even give advice. (Interesting: In the english translation it says "...we cannot justify invasive "therapeutic" approaches...". In the german original they say "Keinesfalls lassen sich damit nach derzeitigem Erkenntnisstand invasive „therapeutische“ Maßnahmen rechtfertigen" which is in exact translation "based on the current scientific position, in no way invasive "therapeutic" approaches can be justified". Small but telling difference...)

It's not a question to me who is doing the junk science here...

They don't talk about recommendation. They don't talk about approvement. They talk about justification. In other words: Following their position, Dr. Dake, Simka, and other did/do something completely wrong!

Cheer, as soon as I get the full text, I'll do a translation.

_________________
"There is only one good, knowledge, and one evil, ignorance." Socrates

Thanks cah. I am afraid that my focus is not very great right now.

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

Got the paper. The examined 10 PwMS (2RRMS, 7SPMS, 1PPMS) and 7 controls (2 healthy, 2 transient global amnesia - TGA, 1 Migraine, 2 somatoform Dysaesthesia). Two of the PwMS had CCSVI, none of the controls. Translation will take some time or even may be impossible to me. I'll try...

_________________
"There is only one good, knowledge, and one evil, ignorance." Socrates

I really wonder about this to.

It is good to look at these things from all different possible angles using different protocols to validate/invalidate findings.

But, (as a medical transcriptionist, aka medical language specialist) I really wonder about their use of medical word roots, ie neurosonological. That word makes me think they were examining nerves (maybe just the brain?) not veins so much.

For anyone trying to figure out what I am babbling about.
The prefix "neuro" is Greek for nerve.
Then "veno" = vein in Latin.
As I understand it these root words (and many others like them) turn up often as prefixes and suffixes in pretty much all major European languages, particularly in medical terminology.

Anyway,
It's probably just a new/different word (that has not turned up in the dictionaries yet) for transcranial ultrasound, but arn't alot of CCSVI problems described as originating in the neck?

Really wish I could read the whole paper. *Sigh*

Apart from the fact that improper or less than efficient methods being used for the study, another thing that is slowly coming out is that it seems sometimes stenosis appear one day and look normal the next day. So, a negative need not be always negative but a positive always is. I think going forward, this aspect will become very clear ...

The mind will sometimes find what it is inherently looking for.
Going by their original valueless statement that CCSVI is "valueless", we should not take this paper at face value.

Neuros should not be studying the vascular system, intervential radiologists/vscular surgeons should not be investigating neurological conditions. Both professions should be working in tandem on CCSVI, concentrating in their field of expertise ie. Neurologists should be monitoring future MRI scans, EDSS scores and general symptoms, the interventional radiologists/vascular surgeons should be looking at vein health and stenosis.

In short, neuros should not be writing a paper on a vascular condition.