This Is MS Multiple Sclerosis Knowledge & Support Community

I am just saying out loud what most of us think. And quite frankly, i am not regreting for it so everyone who wants can tag me as the black ship or whatever.
I get crazy when they are playing me and i see this as normal behavior. This goes for me life and when trying to interact with people in the internet also. And of course i am not stupid whatsoever i can assure you.

I am not a scientist. I am just what i am. In here all is needed to be known is that i have MS. I believe in CCSVI theory not only because it is our only true hope but because it makes sense as well.

Nevertheless i insist:

Zivadinov really fucked up with that newsletter of his.

I do not think you are stupid, but at the same time, I think no one knows what most people think. I certainly hate it, when people guess what I am thinking without asking me. As Felix said in the Odd Couple, "never assume...you make an ass out of you and me..."
Anyhow, there was a thread in the general forum about irrational anger and MS...I think they have something there.
I am suggesting that you just calm down...do some meditation, have a cup of tea, stop being obsessed by numbers, they mean nothing to your specific case in the end.

I think Zivadinov and Haacke are absolute GENUISES!!! Lets face it big pharma is going to do everything they can do to bash this ccsvi theory because it is going to majorly affect their bottom buck.

So for these guys to say STAY ON MEDS NOW eases big pharma a little bit. It is like appeasing both sides at once while really driving the ccsvi into further research.

Oh I am throughly impressed. They know ccsvi is the cause of ms, they just have to go about via the "political" way. Who the hell is really going to stay on the shots after getting the procedure?

kc

I for one tried the shots avonex and copaxone and my voice inside said "they are not gonna help" so I have been doing ldn instead. One of the best decisions I have ever made.

I share your frustration costumenastional, anyone closely following this would. Dont let others wind you up, it's only their frustration directed at you.

KC. I think everyone should stay on shots ... "Just in CASE" ... why not?

What does it hurt (aside from what it does hurt).

I'm a big believer of the just in case ... GET THE CCSVI TREATMENT, STAY ON MEDS FOR A WHILE (LIKE ZAMBONI'S WIFE) ... LET YOUR BODY HEAL ITSELF AS MUCH AS IT CAN ... AND THEN MAYBE WE'LL HAVE STEM CELL TREATMENTS TO FULLY REPAIR EVERYTHING ... OR BY THEN WE WON'T NEED SHOTS.

But why risk it and go off shots. I don't see why Big Pharma is fighting this so much ... (I mean I do ... but if they'd just join in and say ok get CCSVI ... but stay on meds (especially if ORAL meds pan out)

Why is it bothersome to people that Zamboni's wife is still on MS medication? He has NEVER said that this is a "cure" or the be-all end-all solution for MS. Dr. Zamboni is supremely rational when he talks about his theory, that it needs further investigation and it needs to be investigated *quickly* because of the potential for helping others.

And just because someone's CCSVI has been treated does not mean that there are not any lingering autoimmune processes going on. What is vascular and what is autoimmune has not been sorted out. Zamboni does NOT claim that MS is not autoimmune, just that it is not primarily autoimmune.

My husband was only worse on CRABs, so he stopped even before CCSVI was an option. It made no difference to his progression. After 5 years on nothing, he has only a few lesions. I think if you don't notice a benefit to being on the CRABs, then you are probably only poisoning yourself.
That is just our opinion and you can do what you want, but for us the BBD and supplements was much more helpful.

Has anyone else than Buffalo found CCSVI in controls?

Mayby u r right about sttayijg on an immune modulator while we r healing. True just because the veins r opened up doesnt mean that the iron will disappear immediately.

Love this site

kc

costumenastional wrote:The fact that so many more MS patients had the condition is a significant finding, said Dr. Zivadinov. He also noted, however, that the vein narrowing was more common in people at more advanced stages of the disease.

"That would be against CCSVI being a primary cause of MS, although clearly this can't be determined yet," said Dr. Zivadinov. "This will be very difficult to determine: what is the chicken and what is the egg."

No, I think this makes a lot of sense. Zamboni's study did not show this difference, where ccsvi is correlated with more advanced forms of m.s. Zivadinov turned up that difference (38% CIS, 80% more advanced m.s.) but has been cautioning that we don't know how to interpret that yet. It could point to CCSVI getting worse as a result of m.s. It could point to CCSVI progressing as m.s. progresses (and simply as age progresses); this is what I suspect. It could indicate that you might get m.s. from some other cause but that if you also have ccsvi you'll have a more advanced case of m.s. It is not clear cut, but only because it's opened up a box full of questions, not because of confusion, in my opinion.

I think one reason to include CISers is because of a belief that CCSVI is congenital and that it would show up in them even if it hadn't caused really bad m.s. yet. It is unexpected that it didn't.

A few points...

People are perceiving a disparity between the newsletter contents and the actual results of the study because their expectations were unrealistically high. As I've written before, because of various facts that we know about MS (heterogeneity, misdiagnosis percentage, etc.), it was highly improbable, if not impossible, that number such as a "95% correlation between MS and CCSVI" would hold up to the scrutiny of a truly blinded study.

Sure, the newsletter was meant to keep donations coming in, because without donations, or people signing up to pay for CCSVI diagnostics, there will be no continuation of the study. But the results announced on Thursday are indeed exciting, from a rational scientific point of view. They found a 2:1 difference in the incidence of CCSVI between MS patients and healthy test subjects. That is very significant, and worthy of some excitement.

All of the info previously released by Zamboni were from unblinded studies. In such studies, bias inevitably creeps in to skew the results. This is why science requires blinded studies before any real conclusions on any hypothesis can be made. Time and time again, evidence from unblinded studies has been shown to be inaccurate when subjected to the rigors of a blinded study.

Back in 2008, a researcher from Italy announced that in both animal and human studies he had found that the common drug lithium had a dramatic impact on ALS, a horrible neurodegenerative disease (also known as Lou Gehrig's disease). The data he provided seemed very strong, but also came from unblinded studies. Understandably, the ALS patient community was beyond joy, and near hysteria. Soon after, a large blinded study was started here in the states, which proved that lithium had absolutely no value whatsoever, so much so that the study was stopped midstream. A quick Google of "lithium and ALS" will give you a few days worth of material to read through.

I want to be clear that I'm not drawing direct parallels between the lithium ALS fiasco and CCSVI. I'm just citing it as an example of the start differences that often can be found between blinded and unblinded studies. I do believe that CCSVI will prove to be an important piece that at the very least will help unravel the MS puzzle. Research on it needs to be pursued vigorously and expeditiously.

As for Zamboni's wife still being on disease modifying drugs, the same could be said for most of his "liberated" patients. His research clearly states that after liberation his patients stay on their DMD's. The fact that his wife also did so should come as no surprise to anyone.

We're all desperate for answers, but, for the sake of our own emotional well-being, we must be careful to not let hope overtake reason.

Marc,

Zamboni's testing WAS blinded, but his Liberation was not. See "Chronic cerebralspinal venous insufficiency in patients with multiple sclerosis" by Zamboni et al, 2008 :

"Sixty-five patients affected by CDMS and 235 controls.... blindly underwent a combined transcranial..." etc, etc.

ozarkcanoer

ozarkcanoer, that's right...I don't get why the Buffalo Press release called theirs the first blinded study of CCSVI.

I think the expectation of a 95% result was because that fit logically with the idea that CCSVI precedes and causes MS. Now if CCSVI is to be down-graded to a significant risk factor, that's still a big break-through. I don't know! I am still trying to work out the significance of the 38% of CISers have CCSVI vs. 80% of "more advanced" MSers.

ozarkcanoer wrote:Marc,

Zamboni's testing WAS blinded, but his Liberation was not. See "Chronic cerebralspinal venous insufficiency in patients with multiple sclerosis" by Zamboni et al, 2008 :

"Sixty-five patients affected by CDMS and 235 controls.... blindly underwent a combined transcranial..." etc, etc.

ozarkcanoer

Seems that I too am confused by Buffalo calling their study the first I'm blinded study of CCSVI. I've been hearing that for quite some time now, also, not just in the recently released results.

The 2008 Zamboni study does state that the initial Doppler scans were blinded, but the venography was not.

Not sure what to make of the discrepancy in the descriptions of the studies...

I think that it is best for all of us to remain calm and support Dr Zamboni, Dr Dake, Dr Haake, Sr Simka and Dr Zivadinov in their work. It would seem that they are taking somewhat different paths ( and somewhat different equipment/procudure) which is really good for all of us as the final outcome may be of better quality and a long lasting solution.

At the very least, CCSVI will prevent further deterioration of our conditions, which for most us may be a very good outcome.

If we are to loose heart and start criticizing these pioneers, we will only help the pharmaceutical industry and their agents.

So please keep on the pressure on our elected representatives to come up with funding for the research work that still need to be done. Also, maintain your pressure on the media as well.