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PostPosted: Thu May 07, 2009 5:32 pm 
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Yeah I'm working away here........ :lol: I collapse like a old flower at about 4 so I am working on empty here, but I'll d my best.

Robbie, In any area where the area has become scarred it is hard like a knot in your muscle but in your brain. The blood vessel still runs through there and is still refluxing so it expands the lesion area schelling says backwards down the vein, in other words lesions always grow down the vein in a specific direction in line with the reflux. it is one of his arguments for the model, an argument he put forth 30 years ago before all the current technology made it possible to see the veins in living people the way we do now.

l123: I agree with Sharon that this may be what is going on, but I do not know. The changes in the circulation are profound in pregnancy

And I want you to consider that you said
Quote:
The current theory is because of the hormones suppressing the nervous system.


The operative word there is theory. We have a story about why the pregnant person does better based on our general assumption that MS is autoimmune, but there is not proof that that is what is going on. But we've heard these stories so often that we "know" them and consider them likely true even though they are only a theory.

Here is another idea, this is just an idea too, but based on this
Quote:
Background Temporal changes in systemic arterial compliance and wave propagation properties (pulsatile arterial load) and their role in ventricular–systemic arterial coupling during gestation --snip--

Methods and Results Fourteen healthy women were studied at each trimester of pregnancy and again postpartum. Experimental measurements included instantaneous aortic pressure (subclavian pulse tracings) and flow (aortic Doppler --snp--

Conclusions The rapid time course of compliance changes and the involvement of both conduit and peripheral vessels are consistent with reduced vascular tone as being the main underlying mechanism. The pulsatile arterial load alterations during normal pregnancy are adaptive in that they help to accommodate the increased intravascular volume while maintaining the efficiency of ventricular-arterial coupling and diastolic perfusion pressure.

from here

the lowered resistance may be the ticket. I agree with Cheer on the thinner blood angle as well. People will have to study these things starting from the CCSVI model and asking themselves "If MS is CCSVI then why might that be less in preg?" to answer these questions once it is known to be there in everyone.

Everything we think we "know" now started from the HYPOTHESIS that MS is autoimmune and assumed that was true at the outset; they then created additional theories on top of that to explain things like why pregnancy seems better and what vitamin D has to do with MS.

This seems foreign because we MSers never heard of it, but there are profound circulatory changes in pregnancy so someone will need to look at that if this is shown to be present in all MSers.

Really if you get tested and find a stenosis like Jeff did, it becomes kind of moot. It is clear from venous ulcers that a pinched venous system causes ulcers in a foot, if you have a pinched system leading from your head how would the body be able to tolerate that without some damage?


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PostPosted: Thu May 07, 2009 9:01 pm 
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I should have posted references to back up what I said -
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Two-thirds of multiple sclerosis (MS) patients are women, and the average age of onset overlaps the childbearing years. Clinicians are frequently asked, therefore, about the most appropriate form of contraception and the risk of an MS relapse/exacerbation during pregnancy and the post-partum period. This paper reviews the literature on the immune system and the effects of pregnancy, oral contraceptives and hormone replacement therapy on MS. Pregnancy does not affect the overall course of multiple sclerosis (MS), but it is well established that the relapse (exacerbation) rate can decrease during gestation, especially in the third trimester, and increase during the 3 months following delivery. There is an increase during pregnancy in levels of the sex hormones oestriol, 17 beta oestradiol, progesterone and prolactin, resulting in relative decrease in immune responses, particularly in the uterine environment. After delivery, levels of these hormones rapidly revert to pre-pregnancy levels, and immune functions return to baseline activity. Elucidating the precise mechanisms underlying the relationship between pregnancy and MS requires an understanding of the aetiology of MS, and the physiology of pregnancy. (excerpt)


http://www.popline.org/docs/1523/277451.html

Fearing the genetic link, I was concerned about my two daughters when they were pregnant. I happened to remember a little bit about what the neuro said - the above post confirms. MS pregnancy is really no different than a normal pregnancy as far as the immune system is involved.


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PostPosted: Fri May 08, 2009 3:37 am 
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Thanks all for responding....its all really interesting....

I am looking for a dr in the UK who can check me so as soon as I have found one I will let you know!


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PostPosted: Fri May 08, 2009 7:32 am 
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OOOhhhhh, look at the last line in Sharon's post there
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Elucidating the precise mechanisms underlying the relationship between pregnancy and MS requires an understanding of the aetiology of MS, and the physiology of pregnancy


Yeah. EXACTLY.


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PostPosted: Fri May 08, 2009 8:03 am 
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mrhodes40 wrote:
OOOhhhhh, look at the last line in Sharon's post there
Quote:
Elucidating the precise mechanisms underlying the relationship between pregnancy and MS requires an understanding of the aetiology of MS, and the physiology of pregnancy


Yeah. EXACTLY.


This is how I'm seeing things now...looking from the CCSVI paradigm, back to the things we know about MS. The puzzle pieces are coming together. One thing that never made sense to me was how some MSers had issues with the HPA axis, circadian rhythm problems, thyroid problems, hormonal issues, if they didn't have lesions or nerve disruption in that area of the brain...now that I see where the hypothalamus is located in the brain, and where Jeff's internal jugulars descend from, I can imagine how venous congestion in this area would have contributed to his sleep issues, fatigue and heat insensitivity.
cheer

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dual stents placed 5/09
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PostPosted: Fri May 08, 2009 8:46 am 
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`1123


Last edited by chrishasms on Sun Dec 06, 2009 1:03 pm, edited 1 time in total.

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PostPosted: Fri May 08, 2009 10:04 am 
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I have to agree with you on that one Chris. "She don't mess around"!!

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PostPosted: Fri May 08, 2009 5:06 pm 
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chrishasms wrote:
Gosh Cheer you are one meticulous person!

Ha! You should see my desk/office, you'd reconsider that comment, Chris :)
cheer

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Husband dx RRMS 3/07
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CCSVI in MS


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PostPosted: Fri May 08, 2009 5:26 pm 
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robbie wrote:
When ms progresses is this just the CCSVI getting worse?


That's what I'm thinking, Robbie. Early on in MS, the body can adjust, veins are more flexible and different routes grow to get the blood out of the brain and spine. Those are called "collateral veins". I saw some of those on Jeff's MRV. They were small, surrounding the closed jugular and really trying to get his blood back to his heart!

What I'm thinking is that early MSers have "relapses" a month or two after the veins are closed down which causes a reflux assault on brain and spinal tissue. MSers then go get some steroids, or some stress relief, or some medication to take down the inflammation, and the blood starts moving again. But it's still not enough.

As the body ages, and the veins undergo chronic inflammation, the endothelial layer breaks down more, the stenosis (narrowing of the veins) becomes worse, until the vein just can't handle it. That's why Jeff had two stents put in. His jugulars just couldn't handle it anymore.
these are just random thoughts, but you're used to that from me :)
AC

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


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PostPosted: Sat May 09, 2009 3:25 am 
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1 more question I have been thinking about...

If the body is having problems pumping blood because of stenoses etc What would happen to the blood pressure and heart rate of that person?
My inital thoughts would be that the blood pressure and heart rate would raise to compensate but I have low blood pressure and a very slow heart rate.....(I think this might be a finding for others with MS)

What are your thoughts on this??

What was Jeff's BP and Heart rate before the op cheer?

http://www.chiroweb.com/mpacms/dc/article.php?id=9148 FYI


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PostPosted: Sat May 09, 2009 7:33 am 
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LR1234 wrote:
1 more question I have been thinking about...

If the body is having problems pumping blood because of stenoses etc What would happen to the blood pressure and heart rate of that person?
My inital thoughts would be that the blood pressure and heart rate would raise to compensate but I have low blood pressure and a very slow heart rate.....(I think this might be a finding for others with MS)

What are your thoughts on this??

What was Jeff's BP and Heart rate before the op cheer?

http://www.chiroweb.com/mpacms/dc/article.php?id=9148 FYI


Jeff's blood pressure has always been normal...it was lower the past couple of years, and is 120/78 yesterday- (just saw doc). I think the body adjusts to the stenosis...but I'm not sure about this LR, a good question for the docs.

Interesting article on cervical spine issues and drainage found by chiros. Thanks for that, LR. I had looked into this in the beginning, since Jeff has a cervical spinal lesion...I'm sure it's all connected to the venous insufficiency.
AC

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


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PostPosted: Sat May 09, 2009 9:51 am 
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Quote:
If the body is having problems pumping blood because of stenoses etc What would happen to the blood pressure and heart rate of that person?

The body does have BP raise if the arteries are stiff and hard from atherosclerosis, but you have to appreciate the way the body is made, the arteries come from the heart and go out to the body in progressively smaller vessels, all of which are thick walled and strong enough to stand the pulsatile waves. These vessels eventually get down to the level of the capillary bed where vessels so small they are about one blood cell wide do the actual exchange of oxygen and metabolites, and somehwre in the capillary bed the changeover to veins occurs (some people have actually tried to find the exact spot in research in individuale capillaries!).

The veins do not "feel" the pulse, they are largely passive and the blood goes back mostly by muscle movement, valves preventing backflow, and gravity. The walls of these veins are thin and they can be stretched as in vericose veins.

While the arteries have baroreceptors that give fedback to the heart about how much pressure is going on in the system that is not true of veins.
marie

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PostPosted: Sat May 09, 2009 10:01 am 
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thanx marie for the interpretation...you have the talent

Cheer/marie LR1234 posted this site which I wonder if we should include in the "master" CCSVI forum.

http://www.chiroweb.com/mpacms/dc/article.php?id=9148

I find it ironic that chiropractors even no about cranial vein and spinal blockages...Neuro? Nooooooo :twisted:


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PostPosted: Sat May 09, 2009 10:45 am 
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Thanks, the Chiro web material is really interesting though it is a little off topic in that they are kind of on about the degenerative BONES in the spine causing issues, but they are talking venous issues as being related to that. The problem I have with adding it to our research is that we don't all have degenerated spines impacting our venous system, and Dr Zamboni's research is about stenoses in the venous system itself. Chiropractors have long offered that regular manipulation will help MS. There is even a little bit of pubmed support for the idea as in here http://www.ncbi.nlm.nih.gov/pubmed/8133195.
However there is a lotof interesting vein MS stuff in there....

I have been involved with keeping a research data base on the web before and what I learned is that if you add everything it gets too cumbersome to search and read. DO we have a lot of voices wanting it referenced in that thread? If so it should go in!
marie

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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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PostPosted: Sat May 09, 2009 12:00 pm 
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Quote:
DO we have a lot of voices wanting it referenced in that thread?
Marie

na..you are probably right to not jamb it up :idea:


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