This Is MS Multiple Sclerosis Community: Knowledge & Support

Ok, the results of the Buffalo study have been discussed, looked at this way, that way, upside down, inside out, and sideways. In fact there has been some wonderful points brought up about possible problems with the way the study was carried out. Is anyone interested in discussing Zamboni's original results in such detail or should it just be chalked up as an an absolute truth?

Count me as one who is as excited and anxious and teary and blithering about CCSVI as anyone. I'm getting a local venography in 17 days, a trip to Poland in April, and if Dr. Simka falls ill, my name is on every conceivable list for trials, studies, stents and balloons. I love the idea of a 100% correlation and I admit I've been using the number on my unsuspecting in-laws. However, I'm afraid Marc is right on this one. The numbers just don't add up. I know it's an adjustment, but the Buffalo percentages are still absolutely remarkable. Also, it might not hurt to go a tad easier on those who have questions, express contrary views or play devil's advocate. It often makes for a more interesting and intelligent discussion when two sides are represented... and truthfully there are no sides. We are all waging a pretty desperate fight against MS.

...unless you think Marc and Bob are secret Biogen spies

..

Y'know Bob sometimes your insults (ok not just yours) are so shockingly blunt that my mouth hangs open, and not just due to a weak jaw. And yet... I believe you're just an ol' softy inside. That's because if I remember correctly from your signature (no longer shown so I could be mistaken...) you are here out of caring for your wife and I'm betting you're an attack dog where she is concerned. Attack dogs are great protectors but they're typically only loyal to one. I'm betting there is a love story there. You want the truth and for good reason.

Nobody can change another person; we can only change ourselves. I won't try to do the impossible but I will choose to think the best of you as much as possible. Be at peace and thanks for helping us look at both sides. Wish you'd be nicer about it sometimes (please pretty please) but I'm sure there are things you wish about our responses as well.



See?? Not trying to blow your cover, Bob, but there IS a nice guy in there.

berriesarenice, thanks for saying that... you are a peacemaker.

Pam

***Warning - new information ahead, and a bit of self-promotion in the PS at the end of the message***

All right - let's look at what I think is some new info.

Zivadinov’s presentation from Hamilton is now on Dr. Haacke’s website:

http://www.ms-mri.com/docs/Zivadinov-Ha ... slides.pdf

I find the following pages quite interesting:

Slide 20 – CVIMS Study - have we seen these results before? I think this is what Zamboni was going to mention at the recent conference in FL but I don’t remember seeing a number. 100% CCSVI in this small group.

Slide 25 – Breakdown of the 1700 people in the full Buffalo study. Lot's of groups… Of interest to me:
*CIS group = 50
*CDMS group includes some NMO (Devic’s)
*RIS group = 50 (Does anyone know what RIS is? I didn’t find a definition after a quick google search…)
*The other ‘CNS’ groups:
--150 CNS Autoimmune-Vascular Disorders
--150 CNS Neurodegenerative Disorders

So… in the press release, we have 280 MS, 161 Health Controls, and the other 59 could be… from any of those non-MS and non-HC groups on the slide. The CIS group for the full study is only 50, so not likely that the mystery 59 are all CIS...

Thoughts? I'm waiting to hear the crunching sounds... of numbers being revisited, or re-thought, or ???

Pam

PS - please know that in addition to following the number-crunching, I am continuing to communicate with vascular docs in my area, tell everyone I know about this new theory of CCSVI, and have submitted a video entry for the American Academy of Neurology film competition. While I've got your attention and if you haven't rated my video entry for the film competition on YouTube, here's the link:
http://www.youtube.com/neurofilmfest#p/c/33/HFbgqa-sCUE
Click on the stars under the video to rate it after you've logged in to YouTube. I'd love to see my CCSVI video win as Fan Favorite so the neuros can view it. Thanks!

Pam,

Thanks for pointing out Zivadinov's slides on Haacke's website !!

Your youtube film is great BTW.

ozarkcanoer

Hello pam,

thank you for the link. I think slide 27 is also quite interesting as it shows some more names and places involved.

Your video is great!

Cheers

Cah

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

Great find, Pam!

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

Indeed! I was so busy thinking about numbers that I missed that one. Alabama? Barcelona? Hmmmm

Great find, but it's hard to interpolate the breakdown of the recently released 500 based on the projected final distribution of the 1700 subject full study.

Since 500 is approximately 29% of 1700, simple math doesn't account for the breakdown that was released last week. It does seem clear that they're separating out CIS from CDMS patients, though.

Curious that they'd include NMO patients in the CDMS population, since there is growing evidence that NMO is a different disease (there's even a blood test for NMO these days)...

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Marc
www.wheelchairkamikaze.com

Just to clarify, I am beyond hopeful at this point. I'm pretty much convinced that CCSVI does play a role in the etiology of a substantial subgroup of MS patients. I'm not sure how large a role it plays, as there likely need to be other elements in place to start the MS engine, but in some patients it just might be the whole enchilada. Just my opinion, of course...

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Marc
www.wheelchairkamikaze.com

Regarding the question of what RIS is:

December 12, 2008 — A new study following asymptomatic patients who were found to have anomalies highly suggestive of multiple sclerosis (MS) on magnetic resonance imaging (MRI) scans performed for other reasons shows that about one-third progressed to clinically isolated syndrome (CIS) or definite MS over a time frame of 5 years.

The authors propose that these MRI abnormalities in the absence of MS symptoms be called radiologically isolated syndrome (RIS), in effect, a step upstream from the CIS that represents the first clinical manifestation of MS.

RIS Link

Dear Pam,
thank you for the post!
Erika

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Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

After taking into account the significant digits of the percentages in the buffalo press release and with some assumptions, the raw data should be as follows:

I agree - I'd sooner put the RIS and CIS in the MS group rather than NMO, but it's not my study!

SqueakyCat - thanks for the RIS definition and link!

Sotiris - Thanks for the spreadsheet - easier to view. Do you think the CIS group includes RIS also? Just curious...