Newbies Please Visit here first

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

Newbies Please Visit here first

Postby LR1234 » Sun Jan 17, 2010 12:40 pm

Hi Newbies,

If you have any questions about CCSVI Please write them here and we will do our best to answer them.

Before posting please check to see if the question has already been asked.

Just to let you all know the CCSVI tracking project thread is for those who have had the procedure done only and for us to follow their progress so please do not post any questions or comments there.


Thank-you and welcome to this site!


Extra points from our Cheerleader!

1. Always use the search function before you post a whole new topic. Most of the new topics you are starting have been discussed on here before.

2. Please keep new posts to CCSVI only. There are places to talk about LDN or other treatments.

3. PLEASE try and read all of the stickies at the top of the CCSVI forum you'll learn a lot, and maybe get some questions answered, too. And you'll be a wiser participant.

4. Try to stay on topic in a thread.

5. Use this thread if you really can't find the answer any place else. One of the elders will pop in to help.

CureIous wrote:How about a search primer while we're at it, that might be a bit more helpful.

PART ONE:
Image
*********************************************************

PART TWO:
Image

*********************************************************
PART THREE:
Image


There are many more good posts to read under that one. This of course speaks to searching in general not just the buffalo study. Enjoy!
Mark.
Last edited by LR1234 on Wed Jan 27, 2010 1:33 am, edited 4 times in total.
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Postby jay123 » Sun Jan 17, 2010 1:20 pm

And can I add if you have any questions other than CCSVI, TIMS has separate forums for most treatments, plus a general forum.
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Postby annad » Sun Jan 17, 2010 1:28 pm

Hello everyone!

Hope I'm doing this in the right spot!

I read on someone's post that Dr. Simka has found venous abnormalities in 95% of the people he's seen. Does anyone know what route those people took after their negative result? We hear about all the positive findings and I was just wondering what happens to those that don't get an answer.

thanks!
a
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Postby LR1234 » Sun Jan 17, 2010 1:32 pm

Hi Annad, Welcome:) I have not heard of the 95% figure but if I was to have a negative CCSVI result I would personally look at the conditions that can be mistaken for MS, here is a list of the ones I can think of...

1. Gluten allergy
2. Hughes Syndrome
3. Mercury poisoning
4. B12 deficiency


If I think of any more I will add...
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HELP!

Postby cathyb » Sun Jan 17, 2010 8:08 pm

http://www.informazione.it/ifadlink300x250.aspx

I don't see this anywhere, and it seems like it has some interesting information in it. Pretty current, too :)
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Postby LR1234 » Mon Jan 18, 2010 2:27 am

Hi Cathy, Welcome! I just seem to get an advert:) I can't see the actual document.
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OOPS! :)

Postby cathyb » Mon Jan 18, 2010 6:34 am

<shortened url>

sorry about that. I especially like this in the last paragraph:

Data from subsequent trials of Buffalo and Poland confirm a close correspondence between CCSVI and MS stands, now, around 90%.

I hadn't heard anything coming out of Buffalo yet, so I thought it was timely. Could be wrong.

Thanks for answering me!
Cathy
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Postby jay123 » Mon Jan 18, 2010 7:27 am

We are hoping to see Buffalo results early in February!
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Postby cathyb » Mon Jan 18, 2010 7:47 am

absolutely! But I was wondering about the article itself, too...don't see it anywhere, so I thought I would post it here and you can post if you think it warrants it.
:)
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Postby cheerleader » Mon Jan 18, 2010 11:24 am

Hi newbies!
We're glad you've learned about CCSVI and you've joined us here. As an old lady around these parts, I'd like to give you some Miss Manners' rules:

1. Always use the search function before you post a new topic. Most of the new topics you are starting have been discussed on here before. Trust me...we've been talking about this for over a year. The search function really works.

2. Please keep new posts to CCSVI only. There are places to talk about LDN or other treatments.

3. PLEASE read all of the stickies at the top of the CCSVI forum before you post your first thread. I know, it's going to take some time, but you'll learn a lot, and maybe get some questions answered, too. And you'll be a wiser participant.

4. Try to stay on topic in a thread. If the heading is a research paper on hypoxia...keep all your comments about that, try not steer the conversation off course. Sometimes we'll veer, and that's OK, but let's at least try to keep things OT :)

5. Use this thread if you really can't find the answer any place else. One of the elders will pop in to help.


CCSVI is exploding around the globe, and TIMS is proud to be the place where the online discussion started. We'd love to maintain this as THE place to go for information and community. Please help us keep the online discussions focused, on point and helpful. We need each other if we're going to get this information out to doctors and patients around the globe.
thanks!
grumpy old lady cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Ana » Mon Jan 18, 2010 11:49 am

annad wrote:Hello everyone!

Hope I'm doing this in the right spot!

I read on someone's post that Dr. Simka has found venous abnormalities in 95% of the people he's seen. Does anyone know what route those people took after their negative result? We hear about all the positive findings and I was just wondering what happens to those that don't get an answer.

thanks!
a


This could be interesting: http://www.thisisms.com/ftopict-8580-.html
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Postby ppicklee » Tue Jan 19, 2010 12:44 pm

Hi there. :-) Obviously I am a newbie as you can see. I have gone through the "intro" type stuff and learned a lot. Even said "hello" to no avail but that's not surprising because there are so many people on. I would love to do the search function but it is not compatible with my voice command software (I have no use of my hands). So I will post my question here. I have read the Zamboni articles with great interest. I am a little bit confused though (can I put in a ha ha here?) I have PPMS and I'm wondering if CCSVI would be of any assistance to me at my advanced stage. If I am understanding the document correctly, PPMS had an improvement in the first six months but not at 18 months. Is that a 12 month static from the six-month improvement or is the 18 month no improvement at all since procedure? Any response would be most appreciated. Thank you in advance.
Patti
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Postby cheerleader » Tue Jan 19, 2010 12:54 pm

welcome, Patti! Thanks for being such a terrific newbie :)
Marie (mrhodes) wrote a really good explanation of Dr. Zamboni's findings for the Facebook page. I'll link it here:
http://www.facebook.com/note.php?note_id=193496167210

It's very thorough and thoughtful...like everything Marie writes. I wish you some answers, Patti.
All the best,
grumpy old lady cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby ppicklee » Tue Jan 19, 2010 1:30 pm

Wow. Thank you for answering me back so quickly "grumpy old lady". It takes one to know one! :-) Your quick response brought tears to my eyes. The stage that my disease is at it is not "sexy enough" to put me in the running (pardon the pun) for any studies. Enough blathering ... I will check the link you provided. Thanks!
Patti
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Postby Cece » Tue Jan 19, 2010 1:36 pm

ppicklee wrote: If I am understanding the document correctly, PPMS had an improvement in the first six months but not at 18 months. Is that a 12 month static from the six-month improvement or is the 18 month no improvement at all since procedure?


I am not sure if there was improvement or not, but it seems notable that there was not any further progression. Also I believe the PPMSers were more likely to have azygous vein blockages and that those were more likely to stay open once angioplastied (was it 95% that stayed open?) compared to jugular blockages (about half stayed open).

Wishing you the best.
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