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patientx wrote:There seems to be a lot of confusion about which study the article is referencing. It is this one:

http://www.neurology.org/content/early/ ... 1.abstract

This is the BNAC ultrasound study completed last year - it has nothing to do with MRV. This data has already been presented in various forms, including the NMSS webcast last year. It seems it is just now being published in a journal.

I agree. This sound very familiar to me from the past.

yep that's the one i posted on page one of this thread.

i also found and posted on page one the 'positive' study while i was looking for the 'negative' one (which confirms higher ccsvi prevalence in ms), so both abstracts are on page one if anyone want to have a look.

so, is the angst about UB's news page not mentioning both journal articles?

personally i don't care what's on UB's news page.. i think it's more relevant that both CCSVI articles are published in peer-reviewed publications and the body of literature on both 'sides' is building.

good stuff!

Lyon wrote:

WeWillBeatMS wrote:to have his wife at least tested for CCSVI with ultrasound. Not to mention the close proximity you have to Dr. Haacke's facilty in Detroit to test for the quantity of iron she might have in her brain. Maybe I'm wrong and you did already have her checked and you're relieved that she doesn't have blocked veins. I hope I am wrong. Tell me I'm wrong please.

You're not wrong and that is something we would seriously consider.......if there was good reason to think that "blocked veins" was something that affected people with MS at a higher rate than "normals" or that people with MS have higher amounts of iron in their brains OR that ANY OF THAT would cause a problem IF proven..

I think either you were up too late replying to my post or maybe I just have you mistaken for a smart guy Lyon cause that dog just won't hunt. You say "If there was good reason to think that blocked veins was something that affected people with MS at a higher rate than normals?" ... huh? really? I thought we answered that question a long time ago. Even this neurologist's study - "Higher CCSVI Prevalence Confirmed in MS" - says so.

Seriously, I was hoping I was wrong and you already took her for the noninvasive ultrasound, which insurance will pay for, and they told you both "nope, no blockages here" and you were both free to go home and say well, at least we're doing everything we can do at this point.

I won't even touch your thing about IF iron in the brain is harmful... or IF blocked veins are harmful... blocked veins in the neck that is... we're not even talking about some varicose veins in her legs or something. Alright, I touched it, sorry.

It's got to be a pride thing I guess then. Come on and MAN UP, put your tail between your legs and say "Sweetheart, you know what? I'm being a jackass to not take you to have an ultrasound done of your neck by someone who is trained in this whole CCSVI thing. Let's see if your neck veins are blocked and then we'll make our best intelligent decision as what to do next."

Do you think any of us are going to jump in and say we told you so if you come back from the ultrasound and start a "Lyon's wife has blocked veins" thread? Well, I know I sure won't. There's too much at stake here.

Do the right thing for your bride. On behalf of us who are on the inside of this MonSter... do it please.


WeWillBeatMS

WeWillBeatMS wrote:Do you think any of us are going to jump in and say we told you so if you come back from the ultrasound and start a "Lyon's wife has blocked veins" thread? Well, I know I sure won't. There's too much at stake here.

Do the right thing for your bride. On behalf of us who are on the inside of this MonSter... do it please.

Thank you for the concern.

I do not believe anything BNAC does

Yet another jugular-centric study that has gone off the rails by basing itself on Zamboni's initial premise that MS is primarily caused by reflux. With a DU, the azygous gets missed and so do valve problems. We really need a study conclusively demonstrating the benefit of venoplasty to MS patients and work backwards from there to find what it is that we are looking for, how best to detect it, and what theory supports it.

Lyon wrote:You're not wrong and that is something we would seriously consider.......if there was good reason to think that "blocked veins" was something that affected people with MS at a higher rate than "normals" . . .

But isn't the fact that MS causes CCSVI reason to get tested? It seems that Zivadinov is in fact saying that "blocked veins" [are] something that affected people with MS at a higher rate than "normals," 2.5 times higher according to this study.

Zivadinov wrote: "Our findings are consistent with increased prevalence of CCSVI in MS, but substantially lower than the sensitivity and specificity rates in MS reported originally by the Italian investigators."

More than half the people with MS have CCSVI according to the study and it gets worse as MS progresses reaching rates as high as 89.4% when you are Primary Progressive. I don't think anyone has suggested rates that high for "normals."

So I think we have to conclude that if you have MS, you are going to get CCSVI since they show the incidence increases as the disease progresses.

Those vascular folks clearly don't know what they are talking about when they suggest that the kinds of malformations they see in people with CCSVI are congenital. How could they know anything about veins? They aren't neurologists after all.

The reason this was news for the Wall Street Journal is that it means people with MS need drugs.

The way to treat malformed valves and the other problems associated with CCSVI is to take drugs that ameliorate MS symptoms which will reduce CCSVI problems. It will also eliminate all the dangers associated with venoplasty.

I'm also fascinated by the thought that all those healthy controls which Buffalo found had CCSVI must have had MS in their past since MS causes CCSVI. We should be studying these people to figure out how they rid themselves of MS, but not yet CCSVI.

Champagne all around now that we know that CCSVI couldn't possible cause MS since it is far more likely to be the result of MS.

Squeakycat wrote:...

I'm also fascinated by the thought that all those healthy controls which Buffalo found had CCSVI must have had MS in their past since MS causes CCSVI. We should be studying these people to figure out how they rid themselves of MS, but not yet CCSVI.

Champagne all around now that we know that CCSVI couldn't possible cause MS since it is far more likely to be the result of MS.

Touché!

Nice thought profile!

Squeakycat wrote:

Lyon wrote:You're not wrong and that is something we would seriously consider.......if there was good reason to think that "blocked veins" was something that affected people with MS at a higher rate than "normals" . . .

But isn't the fact that MS causes CCSVI reason to get tested? It seems that Zivadinov is in fact saying that "blocked veins" [are] something that affected people with MS at a higher rate than "normals," 2.5 times higher according to this study.

Zivadinov wrote: "Our findings are consistent with increased prevalence of CCSVI in MS, but substantially lower than the sensitivity and specificity rates in MS reported originally by the Italian investigators."

More than half the people with MS have CCSVI according to the study and it gets worse as MS progresses reaching rates as high as 89.4% when you are Primary Progressive. I don't think anyone has suggested rates that high for "normals."

So I think we have to conclude that if you have MS, you are going to get CCSVI since they show the incidence increases as the disease progresses.

Those vascular folks clearly don't know what they are talking about when they suggest that the kinds of malformations they see in people with CCSVI are congenital. How could they know anything about veins? They aren't neurologists after all.

The reason this was news for the Wall Street Journal is that it means people with MS need drugs.

The way to treat malformed valves and the other problems associated with CCSVI is to take drugs that ameliorate MS symptoms which will reduce CCSVI problems. It will also eliminate all the dangers associated with venoplasty.

I'm also fascinated by the thought that all those healthy controls which Buffalo found had CCSVI must have had MS in their past since MS causes CCSVI. We should be studying these people to figure out how they rid themselves of MS, but not yet CCSVI.

Champagne all around now that we know that CCSVI couldn't possible cause MS since it is far more likely to be the result of MS.

Squeekycat you know we really don't have time for that kind of sound logic.

But in all fairness it wasn't Dr. Zivadinov who came to that possible conclusion.

"The higher prevalence of CCSVI in progressive MS patients suggests that CCSVI may be a consequence, rather than a cause, of MS," says Bianca Weinstock-Guttman, MD, co-principal investigator of the study and UB professor of neurology. Therefore, the possibility that CCSVI may be a consequence of MS progression cannot be excluded and should be further investigated.



WeWillBeatMS

Hold on, hold on, this is great!

Since neurologists prescribe symptom-management drugs all the time (Aricept for memory problems, Prozac for depression/fatigue, etc etc), then can they prescribe angioplasty for other symptoms?!

Excellent news, I'm going to go get an appointment RIGHT NOW!

Cece wrote:Plethysmography collars! It would be wonderful if they provide an objective way to separate people with CCSVI from people without CCSVI. Research results will be more meaningful and less debatable. We only just heard about the collars, I don't suppose we'll have research results from studies using them for awhile now. Still seems brilliant to me.

The other objective measurement coming out of ISNVD was Dr. Hubbard's fMRI showing differences pre- and post-venography.

Unfortunately, his study was ALSO flawed, in that he did not take LEARNING into account. Almost any one who takes a test twice will do better the second time around. I'm afraid his study may be just as flawed as the one we are discussing.

Lyon wrote:

WeWillBeatMS wrote:Do you think any of us are going to jump in and say we told you so if you come back from the ultrasound and start a "Lyon's wife has blocked veins" thread? Well, I know I sure won't. There's too much at stake here.

Do the right thing for your bride. On behalf of us who are on the inside of this MonSter... do it please.

Thank you for the concern.

No problem. If you find a ultrasound tech that is trained in the Zamboni protocol in MI could you let me know please? I grew up there and have a cousin's wife who has MS and I am trying to get her to be tested for CCSVI.


WeWillBeatMS

WeWillBeatMS wrote:

Lyon wrote:

WeWillBeatMS wrote:Do you think any of us are going to jump in and say we told you so if you come back from the ultrasound and start a "Lyon's wife has blocked veins" thread? Well, I know I sure won't. There's too much at stake here.

Do the right thing for your bride. On behalf of us who are on the inside of this MonSter... do it please.

Thank you for the concern.

No problem. If you find a ultrasound tech that is trained in the Zamboni protocol in MI could you let me know please? I grew up there and have a cousin's wife who has MS and I am trying to get her to be tested for CCSVI.


WeWillBeatMS

YOU MAY TRY CALLING WAYNE STATE UNIVERSITY and getting ahold of dr Haacke or emailing him off his website (MS-mri.com) i was told he has someone woking on this very thing...

numbness23 wrote:

WeWillBeatMS wrote:

Lyon wrote: Thank you for the concern.

No problem. If you find a ultrasound tech that is trained in the Zamboni protocol in MI could you let me know please? I grew up there and have a cousin's wife who has MS and I am trying to get her to be tested for CCSVI.


WeWillBeatMS

YOU MAY TRY CALLING WAYNE STATE UNIVERSITY and getting ahold of dr Haacke or emailing him off his website (MS-mri.com) i was told he has someone woking on this very thing...

Thanks numbness23. I just sent an email to info.mrimaging@gmail.com requesting for contact info for an ultrasound tech in Michigan who is trained in Zamboni's protocol.

WeWillBeatMS

eric593 wrote:I don't understand a stitch of what you've said, 1eye. Are you still on a starvation protest?

What I'm saying is that this puts into question Dr. Zamboni's findings when such a large blinded study couldn't duplicate the prevalence of CCSVI. And it casts doubt on the theory of a congenital nature to CCSVI when so many MSer's didn't have CCSVI early on and the prevalence grows the more severe the illness.

This is how science works: a hypothesis is put forth, it is tested, and subsequent studies attempt to replicate the earlier findings. These results do not support Dr. Zamboni's research. As Joan has said, future research will elucidate CCSVI's role in MS, and this research casts doubt on Dr. Zamboni's hypothesis and study.

What it doesn't tell us is whether treating CCSVI alleviates any part of MS pathogenesis or symptoms or whether a higher rate of CCSVI is found in MSer's versus controls on venogram. Hopefully subsequent research will elucidate that.

Eric,

As dreddk pointed out, the study done at the American University in Beirut did just that. They used catheter venograms to compare MS patients to healthy controls. Also, you may find this study interesting:
http://onlinelibrary.wiley.com/doi/10.1 ... 6/abstract
(though it didn't generate much discussion here, other than the usual bashing based on the abstract).

The authors in this study went to great lengths to replicate Zamboni's methods, and answer criticisms of other studies. Among the measures they took:

- they used the same Esaote MyLab-Vinco ultrasound machine used by Zamboni
- the ultrasound techs attended Zamboni's course on detecting CCSVI
- the ultrasound techs visited Dr. Zamboni and his group on at least 2 other occasions to refine their CCSVI detection abilities
- they used the same Quality 3D Doppler profile (QDP) algorithm recommended by Dr. Zamboni
- control subjects could not be family members of the MS subjects

The results of this study only trended toward 50% of MS patients being CCSVI positive, with 36% of controls testing positive.