This Is MS Multiple Sclerosis Community: Knowledge & Support

I dont believe they are separate Rad.

If you think about it, if a simple mechanical problem was that easy (bearing in mind the jugs and nerves are in a very resilient cable housing) then MS would be a lot more prevalent.

I personally think that the congenital weakness (collagen etc) leads to those problems, or more specifically prevents the body from responding to said problems.

Just thinking aloud really.

Wow. You guys are truly fantastic...... and so diplomatic with your replies... kindly giving answers, patiently pointing out the right direction for each query, and even providing links!

Not in the brain. Why not in the brain? The jugulars do go up into the brain. Has no one yet had any problems with their jugs up in the brain rather than just in the neck? Is there some phenomenon that stops blockages of the jugs in the brain? If there are blockages of the jugs in the brain, what can be done about them?

If I may say, unless this paradigm can be boiled down to more simple components, word won't spread very fast, especially not to patients, such as myself. Just trying to do my part by trying to understand what I'm pushing my doctors for. I honestly don't want something that I can't understand myself, but I am trying! Not in the brain... hmmmm.

Thank you very, very much.

~HappyPoet[/i]

Hi there, Happy Poet.


Edited to add -- I just saw this thread with exactly what I was talking about:

http://www.thisisms.com/ftopict-8575.html

Jamie -- your comments struck a chord somewhere and now have me thinking out loud as well. (Oh no) I keep thinking about how the family members of people with MS have so-called silent lesions. So one theoretical way that could make sense is if congenital malformations were exacerbated by a collagen defect (that prevented an effective response, as you speculated), expressed to a greater or lesser degree in different family members --so you might have more or less of a symptom picture.

Jamie, don't you think that some of the cases we've seen, like the one on Haacke's site where the carotid pinches the jugular, the one poster whose vertebrae cut off one jugular and severely pinched the other, those cases of twisted jugulars, or the patients who have three jugulars (wasn't Mel one of them?) are different from a simply phase change in the tissue of the vein wall? They're likely congenital, but definitely not a disease that would affect vein tissue in areas away from the blockage itself. Or else that would be a huge coincidence, it would be like I pinched a vein in calf and all of a sudden the collagen in my thigh would switch! Impossible, don't you agree?

OK...the collagen discussion was from my notes in Bologna.



He did not posit which came first, collagen changes or reflux. We are still in the early stages, and even though we all may love to play guess which came first, it's up to the docs to do the research.

As far as have a coke and a smile...it's just not going to be that easy. Read all the research, take notes, find the best way YOU know how to present the info to doctors. Print out Ashton Embry's article, the Zamboni research, the Haacke website. There is a plethora of info out there now -all housed on this site or the Facebook page. Go! Rah! You can do it people!
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Cheer, I think we're just having a discussion about whether collagen change could cause a neighboring vertebrae to stick out, could cause a third jugular to grow, could cause the carotid artery to pinch the jugular, or could cause jugulars to become twisted. These are things we've clearly seen in MRV images of people with MS. I claim the answer to the above four questions is no, i.e. the collagen change can not have been causative to the reflux in these cases. In cases where the blockages has no obvious external mechanical reason, collagen changes might be to blame.

The constructive result of this discussion is hence an encouragement to the doctors (either through them reading this board, or through the ones who learned from the discussion bringing it to them) to study vein walls away from the site of the stenoses, even as far as a different vein (say a leg vein) to see if there are signs of an overall venous disease underlying MS. Furthermore it is an encouragement for them to study collagen also in MS patients with mechanical (i.e. externally induced) venous blockages.

I agree with you that we have to bring the research to our doctors, but for that it is paramount to have the exchanges of knowledge and thoughts we have here. Otherwise we'll throw bits of regurgitated knowledge at the docs without understanding what we're talking about. Risky effort. Lay mens questions aren't useless to scientific progress, they can be crucial to it. I say this from the experience of being a scientist myself.