Buffalo Newsletter

mshusband · Post by **mshusband** » Thu Feb 04, 2010 5:42 pm

That has to be one of the best things I've read. For me, it implies only positives.

They're planning a phase II study.
They're planning on EXPANDING their study to other locations.
They're going to work with insurance companies to start covering this.
They're talking about treatments, and potential options for the future and which option they will endorse.
They're talking about how this will get global press.
The words they use imply that there is a significant link they have found.

I am very excited to see the real results, but this letter basically gives them to us I think.

I'm really bouncing off the walls here thinking that this medical study has found something ... and it has found something BIG.

WOW.

SO EXCITED!

sbr487 · Post by **sbr487** » Thu Feb 04, 2010 6:21 pm

quote]
I can further tell you that our research will pose new and provocative
questions about the CCSVI theory which will be addressed
in the second phase of the CTEVD Study.
[/quote]

I am feeling very nervous about the above sentence!!!
Unsure how to interpret this ..

Ruthless67 · Post by **Ruthless67** » Thu Feb 04, 2010 6:35 pm

OOHHHHHHHHH................MMMMMYYYYYYYYYYYYY..............GGGGOOOOODDDDDDD..................

Lets all dance in the streets as soon as we dry our eyes!!!!!!!!!!!!!!!!!

Lora

mangio · Post by **mangio** » Thu Feb 04, 2010 6:49 pm

I'm calling the surgeons office tomorrow.

msgigiski · Post by **msgigiski** » Thu Feb 04, 2010 6:49 pm

I am new to posting here. I have been reading all about CCSVI here, and I just had to post this here. As far as other questions being addressed, there may be many questions asked. I for one can come up a few even if almost all MS patients have CCSVI. like: What does the location of the venous problems tell us?; What causes CCSVI?. I am sure you can come up with many more. This looks to be totally brand new direction for vascular and MS researchers. Awesome. I would love this if I still had the cognitive powers I once had.

cah · Post by **cah** » Thu Feb 04, 2010 6:52 pm

sbr487, though I don't know of course, I'd say:

Note that it's "about" the CCSVI theory, not "to". My provocative question about the CCSVI theory would be: "Why has it been declined so long?"

If this doesn't convince you, think about that: They now have announced that they will offer diagnosis in mid february along with announcing to publish first results in february. Would they just begin to commercially offer diagnosing (and trying to get it covered by insurance) while having to say that it's all nonsense or useless? Wouldn't make any sense. On the contrary, it even wouldn't make much sense to offer diagnosis if they didn't knew that treatment is at least possible...

Today is a milestone!

Reytan · Post by **Reytan** » Thu Feb 04, 2010 7:16 pm

EXCEPTIONAL !!!

Certainly looks like a BIG ONE to me…
Lots of hints before official confirmation.
WOW, nobody is gonna stop us now

ElMarino · Post by **ElMarino** » Thu Feb 04, 2010 7:17 pm

That's about as positive a tone as you could get. They wouldn't possibly be talking about the phase II studies if the results weren't very much backing up the CCSVI hypothesis. That's good. Perhaps I can start getting excited about this now. I'm really terrified of catheters in veins though.

HappyPoet · Post by **HappyPoet** » Thu Feb 04, 2010 7:21 pm

I'm so happy I wish I could cry (my mood med (happy pills) won't let me).

~HappyPoet

Mechanicallyinclined · Thu Feb 04, 2010 7:51 pm

No doubt there are still questions to be answered, but this is HUGE!
I think these guys at BNAC have a better sense of direction now. This study is huge for every other study and we should see definite shift for this whole movement! I'm sure the whole vascular community is paying attention to this. If they weren't, they soon will be.

sbr487 · Post by **sbr487** » Thu Feb 04, 2010 7:52 pm

cah wrote:sbr487, though I don't know of course, I'd say:

Note that it's "about" the CCSVI theory, not "to". My provocative question about the CCSVI theory would be: "Why has it been declined so long?"

If this doesn't convince you, think about that: They now have announced that they will offer diagnosis in mid february along with announcing to publish first results in february. Would they just begin to commercially offer diagnosing (and trying to get it covered by insurance) while having to say that it's all nonsense or useless? Wouldn't make any sense. On the contrary, it even wouldn't make much sense to offer diagnosis if they didn't knew that treatment is at least possible...

Today is a milestone!

Thanks, Cah ...
The article is full of +ve comments but I just started worrying if the research team has decided to do a course correction after seeing the initial results ... I hope I am wrong ...
You see, after being in this hell for so long all the +ve-ness of a lifetime lifetime has been sucked away ...

thornyrose76 · Post by **thornyrose76** » Thu Feb 04, 2010 7:54 pm

I read everything so quickly -is it that they are going to be doing a new study, one which they will be putting stents if blockages found? When does this stud start? Sorrfy my heart is pounding! Wish my mother woould get more excited about this...

thornyrose76 · Post by **thornyrose76** » Thu Feb 04, 2010 7:56 pm

Zamboni and colleagues deserve the Nobel...

girlgeek33 · Post by **girlgeek33** » Thu Feb 04, 2010 8:15 pm

So very, very amazing!!!! Definitely reads as if the first study proved significant results!!!! Bummed that they aren't offering to submit to insurance with a valid script. i worry that by offering to test for a price that they open this up to the critics to misinterpret...

Thanks for all who have done sooooooo much to get this here in the US and for getting all of this information out there to us MSers!

Vonna · Post by **Vonna** » Thu Feb 04, 2010 8:25 pm

What awesome news!!

Thank you for posting!