CCSVI skeptics

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

Postby Lyon » Sat Sep 12, 2009 2:03 pm

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Last edited by Lyon on Fri Jul 29, 2011 1:09 pm, edited 1 time in total.
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Postby mrhodes40 » Sat Sep 12, 2009 2:57 pm

Cheer that was an interesting explanation to Ken's question.


It was wasn't it? the new findings in the SWI method appear to be ready to offer brand new looks at what is happening in MS lesions when using that information in light of the CCSVI model.

Cheer commented in her Bologna notes that Dr Haacke said that nothing in the CCSVI model is in conflict with the work he has done. I felt that this comment was very exciting. A search on google scholar for "haacke swi multiple sclerosis" gives a quick look at the kind of research this man has been doing. It means a lot that his work is in harmony with CCSVI.

Paper from 2005
paper from 2000
recent paper
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby notasperfectasyou » Sat Sep 12, 2009 6:41 pm

Thanks everyone, and esp Marie and Cheer. I will go through Cheer's post, will take a while. But, I can work google pretty good. I'm something of a ccsvi lurker/spectator right now. You probrably noticed I'm really posting a lot about abx now, but that's not a reflection of any less interest in ccsvi. Honestly, I think it's good to keep it at arms length right now. But, you all know I care very deeply for all of you and hope and pray that this is "IT". So, next week I'll google up from Cheer's post and work on it in the obsessive approach I take to things. I'll check BT later and see if anyone made it over there. Thanks, Ken
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Postby mrhodes40 » Sat Sep 12, 2009 7:56 pm

Ken,
abx helped me somewhat though I progressed on them, but your Kim is getting really good help from that quarter it seems. If I was you, I'd be doing the same thing; waiting to see and going with what works.

I am really happy for you guys that abx are working for her. I think you are smart to keep this in your back pocket ....it'll be there when you need it........... 8)
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby notasperfectasyou » Sat Sep 12, 2009 8:43 pm

Braintalk

Good analogy, back pocket. Ken
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Postby whyRwehere » Sun Sep 13, 2009 3:02 am

Good point Scorpion, as I don't have MS, but have been suffering this weekend from being married to someone with MS. Not to be disrespectful, but doing everything and walking on eggshells with everything you say can be very wearing.
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Postby cheerleader » Sun Sep 13, 2009 9:32 am

just wanted to say that any questions from skeptics are always more than welcome! They help us all banter around the science behind CCSVI. Since the conference, I feel more adept at explaining the variety of connections of prior MS research. Dr. Haacke has a cool take on it....none of this new research trashes the old, it all fits, and CCSVI puts it together.

As far as "tone"....yeah, MS can change a personality. I used to take Jeff's snapping at me personally, until he explained that sometimes he just couldn't take another minute without lying down and being silent. It wasn't me...it was the world. When he got his MS diagnosis, I better understood. When I saw what has been happening to his beautiful brain, I really understood, and I forgive him. But even caretakers need to vent now and then, right why??? I think we've all let loose on here, and we've all worked it out. Kinda like family.
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Postby whyRwehere » Sun Sep 13, 2009 10:31 am

Yes, I have vented this weekend...and I broke the light switch...well it still sort of works. It isn't easy for everyone involved.
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Postby CureOrBust » Sun Sep 13, 2009 3:24 pm

I have a question, which I have yet to see discussed explicitly in a paper thus far; which has proven in the past, NOT to show that it never actually happened. I personally have a single trigger for a relapse, that being a cold/flu. When I always remind my neuro, he always responds with "that's quite common for people with MS". So, if its common, where's the medical explanation? Huh? huh?

When I think about it personally, it's hard to explain how easily I have adopted this idea, without a real personal understanding / explanation for my relapses.

My guess is that the cold / flu somehow makes the tight junctions of the BBB more susceptible to damage OR an activated immune system goes a little more crazy with the collateral damage. But I would like to read something from someone who actually knows what they are talking about, knowing its all theory for now.
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Postby cheerleader » Sun Sep 13, 2009 3:57 pm

Dr. Zamboni talked about it briefly, Cure. He mentioned bacteria and viruses as being "endothelial disrupters" which can cause an exacerbation of stenosis by creating vasoconstriction. It will be in his paper next month in Vascular Surgery. That's always been my take on it, since the endo paper I wrote last year. I never really looked at it from the autoimmune viewpoint....but maybe others have a different take on it.
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Postby whyRwehere » Mon Sep 14, 2009 1:10 am

It wouldn't be that the reflux which causes leaks/bleeds could be allowing the bugs to leak into your brain, huh?
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Postby Ana » Mon Sep 14, 2009 3:01 am

The only connection between 2 relapses are for me 2 long voyages by airplane to the tropics, one with high altitude (Andes). I got relapses about 2 months after the holidays, so I guess there is a connection to the journeys. And that seems to fit perfectly to venal problems.
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Postby sou » Mon Sep 14, 2009 3:08 am

Hi.

There is significantly lower oxygen pressure in high altitudes, which makes oxygen absorption more and more difficult for the blood. This is the reason that people living on high mountains are so red. Their body produces more blood to overcome this lack of oxygen and absorb as much as possible.

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Postby BBE » Wed Sep 23, 2009 12:56 am

There is a summary on National MS Society from ECTRIMS Conference under "Therapeutic Strategies for MS and More Highlighted at ECTRIMS Conference".
It was said that after the Bologna Conference there will be a presentation held at ECTRIMS. Why didn`t they mention CCSVI at ECTRIMS?
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Postby ErikaSlovakia » Wed Sep 23, 2009 2:21 am

BBE wrote:It was said that after the Bologna Conference there will be a presentation held at ECTRIMS. Why didn`t they mention CCSVI at ECTRIMS?

Hi, there were 2 papers presented at ECTRIMS. I saw it in the programme.
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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
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