Interviews with ISNVD participants are online---

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Interviews with ISNVD participants are online---

Postby cheerleader » Tue Feb 28, 2012 4:21 pm

Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Interviews with ISNVD participants are online---

Postby Cece » Tue Feb 28, 2012 6:29 pm

Excellent!
What a great job that ISNVD has done of making information available to the patients. From the abstracts to these videos to the Patients' Day webinar. And this is only their second year.
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Re: Interviews with ISNVD participants are online---

Postby Billmeik » Tue Feb 28, 2012 7:56 pm

nice
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Re: Interviews with ISNVD participants are online---

Postby MrSuccess » Tue Feb 28, 2012 11:13 pm

how wonderful to now be able to put faces and voices to familiar names.....

I found Dr.Fox's interview extremely interesting .

Any word on where / when ISNVD # 3 will take place ?

I fully expect to see solid CCSVI study results presented at ISNVD 3.

If you asked me if any of this was possible 3 years ago ............ :o



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Re: Interviews with ISNVD participants are online---

Postby Cece » Wed Feb 29, 2012 6:54 am

ISNVD #3 will be in Poland!
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Re: Interviews with ISNVD participants are online---

Postby Billmeik » Wed Feb 29, 2012 10:01 am

dr fox's interview was great. That's the stuff we should be reading about in the newspaper
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Re: Interviews with ISNVD participants are online---

Postby cheerleader » Wed Feb 29, 2012 2:29 pm

Billmeik wrote:dr fox's interview was great. That's the stuff we should be reading about in the newspaper


I agree, Bill--
Finding truncular venous malformations, which change blood flow, in the autopsied veins of pwMS is a huge breakthrough in understanding the disease. Sadly, the mainstream media is not interested, since their sponsors will not benefit from this announcement. Bravo to Claudiu Diaconu, Case Western student, for initiating this important study, and thanks to Dr. Fox for speaking about it at the ISNVD conference.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Interviews with ISNVD participants are online---

Postby 1eye » Sat Mar 03, 2012 10:21 am

Thanks to cheerleader, we knew about Dr. Fox's work, as soon as it was published. That's one good thing about this place. There almost seems to be a competition to get the best info. I think it's great. The ISNVD interview I found the most earth-shaking was Dr. Alexander's, where he said they have markers for MS that are related to vascular remodeling, involving the state of the endothelium in the veins. To me it was an unexpected deepening of the theoretical side, strengthening the CCSVI theory.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Re: Interviews with ISNVD participants are online---

Postby Cece » Sat Mar 03, 2012 10:44 am

thanks, 1eye, I'll watch Dr. Alexander's next.
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Re: Interviews with ISNVD participants are online---

Postby cheerleader » Sat Mar 03, 2012 11:25 am

1eye wrote:Thanks to cheerleader, we knew about Dr. Fox's work, as soon as it was published. That's one good thing about this place. There almost seems to be a competition to get the best info. I think it's great. The ISNVD interview I found the most earth-shaking was Dr. Alexander's, where he said they have markers for MS that are related to vascular remodeling, involving the state of the endothelium in the veins. To me it was an unexpected deepening of the theoretical side, strengthening the CCSVI theory.


Thanks, one eye. Not so sure it was about competition for best info....I've always been on the quest to help Jeff feel better. And to make sure my son doesn't get this wretched disease. Urging researchers to follow up on this line of inquiry is why I'm still posting...we need these brilliant minds working together, and we need the interested parties to help do the urging and funding of these events.

Dr. J. Steven Alexander has been looking at the vascular connection in MS since since the early 2000s. I got to sit with him and discuss the endothelium at the first Bologna conference in September 2009. He was particularly interested in my noticing Jeff's high serum markers for inflammation and coagulation during his first flare, and linking that to endothelial dysfunction, as that was/is his line of investigation-- Endothelial microparticles in the blood of pwMS. He was reading the TIMS boards back in '08, and knew me as Cheerleader. Not sure if he's still checking in....but if so---"THANKS, Dr. Alexander!!"
http://www.isnvd.org/files/bios/Alexander.pdf

Dr. Alexander is an endothelial and vascular biologist working on how microvascular injury associated with forms of neuroinflammation (Multiple Sclerosis, stroke, Alzheimer’s disease), cancer and Crohn's disease. All of these diseases exhibit disturbances in blood vessel barrier function contributing to tissue edema. Current models indicate that endothelial activation, survival and junctional integrity (tight and adherens junctions) are metabolically regulated and modulate solute and inflammatory cell extravasation during inflammation. A new and important direction in this area of research is the understanding of the significance of endothelial microparticles as predictive markers and mediators of acute and chronic BBB inflammation, particularly in MS and AD.


cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Interviews with ISNVD participants are online---

Postby Cece » Sat Mar 03, 2012 12:55 pm

There is so much info these days, it's difficult to keep up with, let alone compete to stay ahead! Often the info I post is poached from Cheer's CCSVI in MS page. There are also other facebook pages, twitter, news articles that get emailed automatically whenever a search term like CCSVI turns up. But I don't think we've discussed the latest info about ... here yet.

[...] is standing for the gap in my memory. Correct use of ellipses?

It wasn't this, although this is interesting too: http://thechart.blogs.cnn.com/2012/02/2 ... pt=hp_bn10

It was this one: http://radiology.rsna.org/content/262/3/947.abstract
Multiple Sclerosis: Cerebral Circulation Time
If anyone is interested in discussing, we can start a thread!
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Re: Interviews with ISNVD participants are online---

Postby MrSuccess » Sun Mar 04, 2012 10:11 am

:wink:
..... ......... .. ....

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