This Is MS Multiple Sclerosis Community: Knowledge & Support

I just received a thank you letter from BNAC for my donation signed by Dr Zivadinov himself !! What a neat signature he has. The P.S. of the letter says :

"P.S. We will report on the preliminary results in early February and will let you know by email about our findings" !!!!!!!

All I can think about is Buffalo, Buffalo, Buffalo !! Corroboration (hopefully) from BNAC for CCSVI !!!!

I just opened this letter 5 minutes ago and it was an upbeat note at the end of a very distressing MS day for me. I hope I make to February in one piece.

Anybody else out there with $10.00 to spare for Buffalo ??

Maybe I should frame the letter. This signature might be worth somthing someday !!

ozarkcanoer

Thanks for the update ozarkcanoer... That's great news! You know how they say everything happens for a reason, right? I donated as well, particpated in their trial, and received the receipt in the mail a few days ago as well. Mine was just that, a recipt, nothing else. That said, I believe you received a personalized note with the extra p.s. at the end to help you through this difficult time. I am so happy to hear the preliminary results will be in early February! I don't think a days gone by since September that I haven't thought about CCSVI. Now I truly have something to look forward to!! Thanks for sharing this wonderful news!!

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Jen

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Doxycycline - 09/10-02/10
Flagyl: 02/10-12/10
Bicillin IM: 09/11-03/12
CHRONIC LYME - 12/10

Remember, today is the tomorrow you worried about yesterday..

That's exciting OC. Damn right, I'll contribute to this study. What is the link? How do I contribute?

I've been holding my breath for May & now you say pelim in February. Fabulous news.

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Kat

I got an envelope to donate, but am unemployed (no one else to bring in money).

I really need to find a way to send some money in.

Thanks Ozark!! (p.s thanks for the compliment on my kitty, he's huge now ))

Thanks japentz, mrssilkycat, and jenf,

Here is the link to donate to BNAC :

http://www.bnac.net/?page_id=497

NO ONE should feel bad if they can't donate. I know many people are on disability due to MS and other circumstances. I am just lucky that I can afford to donate and I am glad to do it. Your enthusiasm is enough of a donation. And the results of this study, I hope, will be a big step in helping us all.

ozarkcanoer

Can't say how, but I've heard through the grapevine that the prelim results of the buffalo study are looking really good for CCSVI proponents. Can't wait for the results to be released.

Good to hear. Not surprising since they compared themselves to Nobel medicine winners back in the fall. They would have to do a lot of explaining if the results weren't interesting for CCSVI.

_________________
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri

Ozark, I too received the same letter. It is very exciting. I am looking forward to "running" to Buffalo (3 hrs away) and jumping on the OR table.

kc

Boy, that felt good.

For another worthy contribution to our cause, check out CCSVI Facebook post on Dr. Haacke. Apparently the requests from imaging sites worldwide for the protocol has gone "viral". Yes!!! His staff is overwhelmed. Mostly students.

http://mrimaging.com/donate.html

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Kat

ozarkcanoer... since i'm new here i'll tread lightly. Don't wanna burst your bubble about BNAC but you might wanna take look at this. Be patient... It takes a while to load...

tx

http://www.cbc.ca/video/#/News/TV_Shows ... 1359955050

Your dr whatever is not really enthousiastic I should say
Stay optimistic as the other one is saying...what i'm starting to believe is that if they didn't find it first they will look forever... as in Canada research research research bring us money in the meantime our friends (the big pharmas) are still making some

Dramis -

Don't worry about bursting bubbles.

I think this piece has already been taken into account. You have to think of the context; that ran on the CBC in Canada a couple of weeks after they had been completely smoked on CCSVI by the W5, the flagship news program of their main competitor, CTV.

It's not surprising that the angle the CBC would like to take was "CCSVI maybe not actually that exciting". The whole story was cut and presented for that effect.

Dr Haacke has said that 15,000 people *representing about 1/4 of the MS population in Canada* had tried to contact his clinic in those few weeks. Imagine how desperate many of those people were. Everyone in Canada knows someone with MS; I was told about CCSVI by at least 4 people who knew I had MS that first weekend; more helpful people continued to send me information for several days.

And, let's be sadly honest: if CCSVI is proved and accepted beyond a doubt tomorrow, there would still be a back-up just for testing years long.

The last thing that anyone involved in the research in Canada needed on 15 December was *more* patients trying to break down their door before they even finished the first stage of their research. Here they spoke with appropriate caution. But I’ve heard other interviews with them; they're excited.

As I recall, that report also featured Dr Freedman, more or less the establishment voice of MS in eastern Canada. If the CCSVI theory is correct, his whole research career has been pointless...

-d[/quote]

Thanks for the video. I just checked it (with trepidation). It seemed to be a follow up or even a filler from the November broadcast(different channel). It's not too bad.

I think Dr. Z was cautious as he should be. Less enthusiastic than us patients but he's a doctor looking for data. Being "optimistic" at this point would be inappropriate for the guy running the study. His comment was almost word for word my neurologist. "Not a cure". "We don't know yet."

There is a huge groundswell of hope and enthusiasm and he would not want to stoke that with his comments.

Anyway, that's my optimistic take on it.

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Kat

I see nothing exculpatory, unique or new in his interview, he's just toning down SOME rhetoric he may have heard, but it's getting ridiculous that SOME people say "cure" and now "everyone is saying it". No we aint!

And obviously, along with that, he details that we don't KNOW that this is the cause of MS, which is another gimme slam dunk.

He's speaking as a scientist, he's not SUPPOSED to be enthusiastic towards hyperbole. Just the fact that people were flooding in thinking they would be treated, is indicative of how little research people care to do before jumping on board, and there definitely is NO cure for that....

Mark

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RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

In spite of everything that was said in this thread, this video really confuses me very much. Compare Dr. Zivadinov in this Video to the one from CTV. It's like two completely different people are talking. In the CTV Video he says that he already thinks that CCSVI is prevalent in PwMS. In the CBC video he says "we don't know...". He wouldn't have said that in the CTV Video if he haven't had any kind of indication, would he? So is he saying what he says in the CBC video really only to calm things down?

I wonder what Dr. Zivadinov and Dr. Zamboni think about Dr. Dake and esp. about Dr. Simka continouing treatment?

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

Zactly. Dial it down, reel things in a bit, add a dash of downplaying. Tis good, gets people to stop and think for a minute. The truth always lies somewhere in the middle. Always. I made sure to iterate to my own neuro that nobody that's been treated talks "cure", at least not emphatically. I also iterated to him, that there will ALWAYS be an immune system component to this that cannot be ignored and that needs to be dealt with, hopefully in the future in an entirely different way. Must have been on the right track, he nodded his head enough times! I think his comments were reasonable and acceptable, considering he's putting his own rep out there, and in the research and medical field, that is EVERYTHING.

M.

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RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap