This Is MS Multiple Sclerosis Community: Knowledge & Support

Couple of points.
This study once again highlights that there is blind spots in the research done so far to disprove Dr. Zamboni's theory. (Are they on purpose?)

The studies that use MRI are proven to be variable over a time sequence, especially for RRMS and early possible MS. The monthly scans sequences have shown that the lesions appear and disappear monthly and likely more frequently if the scan interval was shorter.

The RRMS form of the disease is less predictable than SPMS and PPMS. The studies on RRMS cannot predict disease progression or cannot show cause for relapses. NO TWO people with MS are the same, similar but not the same.

Studies of PPMS and the outcomes of CCSVI treatment are going to require longitudinal study but will be more consistent than guessing reason for changes in RRMS disease, changes due to CCSVI treatment.

Until the same group of 'patients' are used in studies by the researchers, there will be speculation and discrepancies in published results.

Until there is more money at stake to prove CCSVI there will be slow progress in understanding the vascular involvement. While the nay sayers (with the financial backing) have the upper hand to drag this out and cause doubt and confusion to discredit vascular involvement time is wasted for PwMSers.

It will take someone to challenge directly by accessing the same research participants to resolve this wasted energy and resources avoiding duplicating what Dr. Zamboni has found and then treating options can be sort. It is possible to contact some of the trial participants of the naysayers research through Facebook and TiMS as they have commented for time to time. It would be more proactive to find these people and organize through the networks of treating IR's to test these same people using Dr. Zamboni's protocols, and end the speculation.

I have said before that the PwMS have to take the stand to get the truth out and end the impasses caused by financial interests. Use the same people in studies, MS is not a disease were you can use differing cohorts in different studies and attempt to 'conclude' any position on MS especially Vascular Involvement!

NZER1. Did you read the study? It doesn't deny the existance of CCSVI. Quite the opposite. And it used Venography which I understand is the gold standard.

dreddk I understand your comment. I see the study as moving the Vascular connection in MS forward. If it was to have used Ultrasound and Dr. Zamboni's protocols with an experienced operator as well as what was used, imagine how the study would have (for little extra time and cost) been more valid still. What are people frightened to learn?
Using some criteria from one theory and then your own take on methodology is a case in point of the egos at play, and the money influence. Whether the study is from pro or anti CCSVI or Vascular supporters it is obvious that the motive is not about the advancement of Quality of life for PwMS.
The most direct route is all ways the shortest and quickest means to an end, why would people avoid being transparent and co-operative?
What have people got to loose? What have people got to gain?

NZer1, apologies I probably misread your comment.

See below for reasons they did not use Doppler - it turns up too many false positives. Again I would say that even if it increased CIS positives to 25% it would increase LMS to 100%. Unless CIS is 90% as well, CCSVI cannot be the cause of MS.

"First, there are no standardized internationally accepted criteria for
normal Doppler venous flow parameters, in addition
to the inherent difficulty in determining flow patterns
in the deep cerebral veins by ultrasound.12,13 Second,
the blinding procedures used by Zamboni and his colleagues
were not adequate, since it was not clear
whether the performing sonographer was aware of the
clinical diagnosis. Based on the work by Zivadinov
et al., it seems that the TCCS-ECD criteria for
CCSVI lack specificity for MS, since they are present
in 25.5% of healthy controls and in 45.8% of patients
with other neurological diseases.11 It has previously
been demonstrated that IJV reflux or stenosis can be
seen in normal subjects and in patients with diseases
outside the CNS.14–17"

I did say, (at or near the beginning of page 1 of this thread) that this study is good in that it does link CCSVI and MS.

My skepticism is that it excludes a lot of what is considered CCSVI - and excludes both SPMS and PPMS. (my take is that it doesn't matter) ... MS is MS - CCSVI will one day be shown to be the cause. It wasn't in this study, I don't argue that, but I don't think one study is the be all end all.

I think there is enough evidence of people being treated for CCSVI (whether it is what these people call CCSVI in this study - or the things Cece and I have called CCSVI additionally) that are very new to MS/CIS/not-even MS diagnosed yet - or like TMRox (Transverse Meyelitis) which isn't even MS that it has to be considered that there's something there ...

I'm confident in the future this will be proven more and more ...

I'm just glad my wife was tested, diagnosed and treated before she even had an MS diagnosis and that as a result at lot of her "MS symptoms" had disappeared by her diagnosis ... and even her neurologist noted them. We knew of course that they disappeared 1 or 2 days after her liberation ... but didn't tell him that. We might on the next visit ... right now, it's our inside joke - because her neurologist is one of the top drug researching neuros in the country (she also has stopped taking her CRABs) ... but we didn't tell him that either as that's pretty much all he could talk about at the last appointment.

I only know my personal experience, and the experience of a lot of people I've talked to about CCSVI - a lot of Dake's patients (personally) and patients who have gone to my wife's IR, as well as Dr. Sclafani and his patients who I have talked to personally. I believe there's A LOT more to CCSVI than this study can tell you ... but I'll concede it's all anecdotal ... of course I hope if you get treated you see those results, and you can understand what it means to be anecdotal and nobody want to hear about it



EDIT, ah, one point I wanted to argue is that CCSVI can not be causing MS because some people don't get results, could (just could) be because of permanent nerve damage. But again that hasn't been proven (I don't argue it) ... just speculation.

I can't speak to this without his blessing, but let's say one person has a lesion that takes up a LOT of his spinal cord's pathway. He is treated for CCSVI - which holds sucessfully - he sees some results, but he can't all of a sudden get up and run about ... because that cord damage was permanent. CCSVI isn't going to correct that when liberated. It just might prevent more damage though (not that in this case anything lower than that big lesion is going to have made much of a difference). Think about having a broken spine and being paralyzed ... then breaking your spine lower (is it really going to matter?). But let's say it is only partially damaged ... and then your body copes and develops new pathways for a while, then you improve bloodflow and nothing gets worse. That's the ideal situation instead of CCSVI limiting bloodflow which just builds upon itself.

Just one man's musings. But discussed with a lot of doctors ... who hope to prove it (in the coming years)

Dreddk

I'd be interested in knowing your reference that most people with CIS convert to MS. We discussed this some time back and there's a wide range of stats out there on that topic.

Here's a relatively recent abstract:

MRI only conversion to multiple sclerosis following a clinically isolated syndrome.

Thanks!

Sharon

Hmm interesting point Sharon.

However the study you refer to is distinguishing between clinically definite ms and radiological definite ms. For CDS conversion was 61% at 20 years. I guess this is linked to many people who have MS but little radiological activity.

From another study of 107 people "concluded that 80% of people with CIS with an abnormal MRI, and 20% with a normal MRI, will develop clinically confirmed MS after an average of 20 years."

Just thought I would add

1. This seems to correlate reasonably well with the buffalo study where it appears a lower threshold for ccsvi was used. 38% of cis had ccsvi and 80% of advanced msers which one might speculate ties in with LMS in this study.

2. Causation. Anyone have any comment on Ashton Emberys comments on this on p6 of the attached. He believes the above is proof ccsvi causes ms as "ccsvi has been proven to be congenital". I'm just baffled how most cis people could have ms symptoms, with ccsvi not manifesting years later, yet still theorize a ccsvi causes ms as Ashton does. Or has the buffalo and beiruit study failed to detect congenital defects present in all CIS subjects.


http://www.direct-ms.org/magazines/Embr ... 2%2010.pdf


My current thought is either

A. MS causes ccsvi

B. Ccsvi causes MS and Neither doppler nor venography are able to detect ccsvi in most CIS subjects

This is interesting, I see that too.

But we have vascular doctors saying they look at a CCSVI outflow obstruction and have the expertise to call it congenital.

I'm throwing my lot in with MegansMom, with the CCSVI always being present but worsening as we age. This next year should be as interesting as the last year in regards to progress and research on CCSVI. More more more.

Agreed. The opposite would force a division of CCSVI. Those whose MS resulted in destuction of the endothelial lining - causing stenosis and those with congenital malformations.. webs, missing veins, inverted valves, etc. causing MS IMHO ..there is no way MS could cause the latter.

PCcakes/cece - if this is the case I guess it raises the question- why aren't the studys detecting these defects in early stage msers

A fascinating paper but you need to go through the whole paper to get useful results and revise the conclusions !!
Point 1 - Early MS was defined as subject with CIS or RRMS. CIS means the subject does not have MS, so must be excluded.
Point 2 - Late MS was RRMS but excluded SPMS so not late MS really.
Point 3 - 18 of 31 people with MS (usual criteria) have stenoses. This is 58% and is more than Buffalo study.
Point 4 - All major veins in trunk not inspected and checks for webs/scepta not recorded.

I conclude (from their data) that people with RRMS for more than 5 years should be tested for Extracranial Venous Stenosis. The study found EVS in 12 of 13 subjects (92%) with late RRMS.

Actually a helpful paper for people with late RRMS to justify undergoing selective venogram/venoplasty.

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

Hi Mark

Agree it definitely suggest venography is the way to go for late MSers given this study.

On point 1 the issue it raised is, if CCSVI caused MS, one would expect to see around 80% of CIS subjects exhibit CCSVI - which they don't. It suggests that either MS causes CCSVI, or they share a common cause.

Irrespective, it appears CCSVI exists and no matter what causes it, trials on efficacy of treatment options are now critical. It will also be interesting to see if there are a specific spectrum of side effects of MS that treatment relieves.

D

From the Buffalo study:
In this large MS cohort, the presence of CCSVI did suggest an association with disease progression, a finding that was not shown in Zamboni's smaller cohort, Zivadinov notes.

"the prevalence of CCSVI was 62.5 percent in MS patients, 25.9 percent in healthy controls, and 45 percent in people with other neurological disorders."

If the case is that CCSVI is more prevalent later in MS and that CCSVI also shows up in other neurological diseases, it would seem that neurological diseases cause CCSVI insteads of the other way around.

Hi dreddk,
Mark has answered this question more scientifically.
I will add..I am one example. I am classified as CIS/ early stage, dependent on the doctor and the day, and I have undergone both doppler(Zamboni protocol) and MRV (Haacke protocol). Both returned positive for CCSVI with valve insufficiency the suspect issue.
I am now part of an imaging trial, isolated and independent from the above tests... stay tuned..