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

Postby peekaboo » Fri Jul 24, 2009 1:33 pm

Maggie m wrote:
know that the RRMS have internal jugular stenosis, but do the secondary progressive have IJS also in addition to the azygos stenosis?


Marie is dx's SPMS and had 2 jug one each side stenosis's (stenosi :? ) with no azygous complications. I am PPMS and had one jug vented and the azygous too.

I don't think there is a stedfast rule and one should expect some variations from the majority stats. There will always be an exception.

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Postby Lyon » Fri Jul 24, 2009 2:45 pm

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Postby Frank » Fri Jul 24, 2009 3:13 pm

Just to give an other opinion about MRI availability in Europe (Germany in my case). I have always been able to get an MRI exam date within two or three weeks and sometimes even at the same day. In my region (my guess) there is about one MRI machine on about 20.000 Inhabitants. The charged cost for an MS-sequence MRI is about 600 EUR.

Regarding the published results I'm also on hesitant side. Because there is no level of blinding included, it is open to any form of bias which can, and already has, generated unfounded, but impressive looking, results. Still its very exciting and as anyone else here I'd love to hear that this will turn out to be the "cure" for MS.

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby mrhodes40 » Fri Jul 24, 2009 3:21 pm

Fernando; good post, welcome!
Jamie, how cool that Mel's relapse cleared so well. The RRMSers treated on emergency basis, because they were relapsing, and their documented speedy recoveries are great news, I am so glad they thought to treat people in relapse so they could do that. It will be exciting to see the actual published research next winter so we can know the full scoop. :D

but other posts have repeated this theme
Quote:
In order to gain wider acceptance, MRIs will almost certainly have to used in the future


I know for sure they did MRI's. Jacobs has a 3 tesla MRI which is why the 4 Americans were treated as part of the liberation 100; so they could be followed there. They have more data than was mentioned in the piece.

As has been repeatedly suggested, This is the chapter in the cx symposium book Dr Zamboni was allowed to write as his summary of his presentation. It is just hint of this ongoing study. We are LUCKY to have been given access to a copy of this inside information before it is generally known. He didn't have to do that for us.

It represents generosity and a level of trust on Dr Zamboni's part to allow this material to even be seen. We should be grateful he even considered allowing it out on a compassionate basis this early in the work before the full data is organized and formatted, as it will be for the eventual publication.

It is here because we asked, many times, to see the cx presentation. I am personally very thankful to Dr Zamboni. He has garnered my deepest respect and appreciation for all he and his team have done for us.

Dr Zamboni knows a thing or two about publishing; He doesn't need any help from the peanut gallery. :lol:
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Postby Rokkit » Fri Jul 24, 2009 4:08 pm

Lyon wrote:With that in mind it seems baffling and unexplainable that, since it hasn't seemed obvious that the CCSVI researchers have gone to great lengths to assure the original MS diagnosis's of the people they are testing and treating, the researchers are nonetheless finding pretty close to 100% occlusion in people WITH MS and pretty near 0% occlusion in those WITHOUT MS.


I'm glad you bring this up because I've wondered about it a lot. My hope is that we just haven't been told all of the specifics of the inclusion criteria, and that the criteria was, in fact, extremely strict. Contrast that with Dr Dake's study in which the participants are virtually self-selected and that could explain why he's seen a couple so far without stenosis.

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Postby mrhodes40 » Fri Jul 24, 2009 4:15 pm

since it hasn't seemed obvious that the CCSVI researchers have gone to great lengths to assure the original MS diagnosis's of the people they are testing and treating, the researchers are nonetheless finding pretty close to 100% occlusion in people WITH MS and pretty near 0% occlusion in those WITHOUT MS]


this is something we've batted around before because it is odd.

but in fact, in the research papers there is a description of how hey screened the controls--they made sure there were not people with any hints of neuro problems other than the neuro problems they used as controls on purpose.

They also said plainly only people clinically definite, it may be that they went to some length to be sure it was texbook perfect and not at all unusual before putting them into the study.

My friend island girl has an MS diagnosis, had no stenosis, but is an odd case in that she is 30 years into ms and still walks 3 miles; really slow moving MS at any case and no relapses. she is doing some other testing now since she had no stenosis. I assume when they stress 'CD' MS they made a point of deciding who fit that criteria.

It is actually a specious point though in a way because you can't operate on a vein that has no stenosis. Therefore by definition 100% of the liberation treated people had stenosis. 100% of the people Dr Dake operated on had stenosis.

One of them was Jamie's Mel whose month long exacerbation cleared up just as did the reported relapsing people in the paper. that is just way cool! 8)
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Postby Lyon » Fri Jul 24, 2009 6:03 pm

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Postby fernando » Fri Jul 24, 2009 6:59 pm

Thanks peekaboo, Arcee and Marie.

Lyon,

The ms patients in this new paper are known to have stenosis, that's all. They were screened for that. I bet they are from the previous studies made by Zamboni.

Regarding not 100%, I agree, but the answer could lie in the screening process and in the size of the sample, it's not necessary to think that the study is flawed. You have said it before several times, these results have to be replicated. If these new studies give 100% well I will worry, but not until then. As far as I know Zamboni has published only two studies.

Have you considered that other studies has strict guidelines regarding patients recruiting? Are they flawed because of that?

Anyway Dake has found MS(?) people without stenosis. Marie has a post about that (subject: "not 100%") . There was no screening process there.

Sorry if I repeated some arguments, still they apply.

Anyway, "Ladran Sancho, señal que cabalgamos"

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Postby peekaboo » Fri Jul 24, 2009 7:08 pm

Fernando and else -

According to the science of statistics...the sample size should be 100 or more to have gainful info. At this pt they say the delta between 100 &1000 make very little difference..although empirical evidence wants more. Again we must remember that we are voyaging in un-charted waters and gathering additional info as well as Zamboni's PRE-liminary evidence.
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Postby Lyon » Fri Jul 24, 2009 7:35 pm

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Postby Ryder35 » Sat Jul 25, 2009 1:18 am

One possibility has occured to me:

MS is a collection of symptoms that may have differing causes. What if the symptoms are caused by stenosis but different things can cause the stenosis to occur. In other words the stenosis is not the final answer just another step along the route. We still do not know what causes the stenosis do we? Maybe other deseases such as Lyme can also cause stenosis and therefore similar symproms. It would be interesting to start testing people who were misdiagnosed with MS for stenosis.

What about those who have got better on antibiotics, do the have or had stenosis? did they ever have MS?
Regards<br />John
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Postby Lyon » Sat Jul 25, 2009 6:26 am

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Postby mrhodes40 » Sat Jul 25, 2009 9:46 am

mrhodes40 wrote:It is actually a specious point though in a way because you can't operate on a vein that has no stenosis. Therefore by definition 100% of the liberation treated people had stenosis. 100% of the people Dr Dake operated on had stenosis.
You lost me on that one Marie. I thought we were talking about a situation in which (very nearly?) 100% of people with MS have proved to have venous stenosis, but instead you are saying that 100% of the people treated for stenosis have stenosis?
Bob


what I meant was that if you want treatment, you have to have a stenosis so in a way it does not matter to you and your treatment decision whether 100% or 2% have this anomaly, if you have it 100% of you has it! But from a purely academic and "criticism of the work" stand point I think it is an odd thing to pick on, even though it is unusual.

We've been trained to think of MS as this highly complex multiple factor possibly heterogeneous disease because the findings to date have always been heterogeneous--several lesion "types' many genetic associations etc etc.

But if MS is a CCSVI then all people with classic MS will have the stenosis.

Just like all people with ischemic heart disease have blockages in their cardiac arteries. 100% of them.

If MS is CCSVI then as long as you take care to only test classic MS you should find it in everyone because it is pathognomic; exclusive to this disease.

Obviously Dr Dake is taking all comers with no attempt to screen people out at all. He should come across people who are not testing positive.

But from a "can I turst this work" standpoint which is what you are really asking, how would it happen that they somehow managed in blinded studies to come up with a finding of 100% if it was not pathognomic for classic CDMS? how could they do that?

Let's review the facts.

they did 2 large doppler studies looking for reflux, roughly 175 msers and 270 controls total, blinded, and all the MSers had 2 or more abnormal findings on doppler, suggesting stenosis.

they did a third blinded study in which the MSers could undergo venogram IF they again had the reflux. Again 100% so all 65 MSers had venograms and all had stenosis. Venograms were done on others needing one for something else none had stenosis in the cerebral veins as did the MSers.

They could have cheated by asking the patients if they have MS before doing the doppler study and making sure they found 2 abnormalities on the MSers (unblinded themselves), but this would not work because the next step checking for stenosis would fail. It also would require pretending they did not have reflux in controls when it possibly existed there, but again this would be "outed" at the venogram stage. They would have had to carry out their plan for falsified research on nearly 850 people total and spend the last 3 years involved in this ruse

It would also require the entire team of 8 researchers to go along with this, a thing I find fantastically unlikely as any work they wanted to do in the future would be automatically suspect. Besides that, what would be the point? you can't pretend this is a pathognomic finding if it is not, it won't help people and MSers everywhere who go to be assessed will not have this.

also if the researchers were wishing it were so, and wanting it to be so, biased in other words, this still will not make blinded studies come out with that kind of concordance in THOSE numbers, maybe on 30 patients you could fool yourself in an honest way, but not in the hundreds

But Dr Dake and Dr Simka seem to be seeing this in patient after patient themselves as well, so it does appear pathognomic, this is the place where false research would have been outed. In fact Dr Simka commented in email that he considers that people without stenosis ought to be reevaluated with regards to other possible neuro diagnoses.

I believe this is going to prove to be pathognomic for MS not only because they documented it in these studies but also because the physiology of a stenosis being downstream of the MS lesions makes a really compelling hypothesis for MS causation.
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Postby Lyon » Sat Jul 25, 2009 10:12 am

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Postby cheerleader » Sat Jul 25, 2009 10:41 am

Welcome to John and Fernando and all the new folks joining this discussion. It's so exciting to hear from people around the world. Thank you for your input.

MS- multiple sclerosis- many scars- refers to what we see in the brain or on the spine. The name of this disease, given by Charcot, comes from the result of injury....not the cause.

MS has always been a diagnosis of exclusion. As diagnostics and technology improve, the differential list for MS grows. In 2009, we now understand that these scars can be caused by Hughes Syndome (APS), Celiac disease, Lyme, ADEM and other differential diagnosis. Dr. Zamboni was very careful to remove participants who might have had a differential diagnosis. It is possible to test for these...and most clinical trials for MS have VERY rigorous standards as to what constitutes CDMS. Dr. Zamboni is working with the neurology dept. at the University of Bologna, and I can't imagine that it was too difficult for them to find CDMS patients using the current testing system. I don't see this as "fishy"...do we question any of the pharma studies using CDMS patients? Top notch neurologists know how to make this diagnosis.

As Marie stated, Dr. Dake isn't testing anyone for CDMS...he's taking anyone who wants to see him. And I'm sure we'll see more folks without stenosis at Stanford.

Now we learn that there is a large group of people who have jugular and azygos vein blockage, leading to demyelinating lesions. These people have been given the MS diagnosis, after excluding all other differentials. (My own husband was tested for Lyme, cpn, viruses, anti-phospholipid antibodies, etc....he has MS) What was found- in 2009- was that he was born with jugular veins that were crimped by his anatomy.

Marie had all other differentials excluded. She has MS. She also was born with crimped jugular veins. And we are seeing this pattern repeated over and over again, around the world. Lew and Mel, born with malformed jugular veins, had CDMS. Multiply this times 100, times 300....and a pattern emerges.

We're still uncovering the connections-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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