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

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Postby scorpion » Sat May 09, 2009 6:28 pm

I have read a lot from the people in this forum and I appreciate you thinking out side the box. However I do not know of any cardiovascular problem that relapses and remits. Also I can not understand why revimmune, which wipes out the IMMUNE SYSTEM, seems to be a very effective treatment. I understand the excitement in this thread but please guys do not give people false hope. MS is way more similar in its progression to autoimmune disorders than to any cardiovascular diseases I can think of. If I am wrong I will cordially invite everyone in this thread to my beach house on the outer banks. Pinky swear!!!
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Postby Sharon » Sat May 09, 2009 6:54 pm

Scorpion you wrote
I understand the excitement in this thread but please guys do not give people false hope. MS is way more similar in its progression to autoimmune disorders than to any cardiovascular diseases I can think of. If I am wrong I will cordially invite everyone in this thread to my beach house on the outer banks. Pinky swear!!!


I for one do not have any false hope and I do not believe the forum has given any. The research has been posted - it is up to everyone to make their own decision.
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Postby chrishasms » Sat May 09, 2009 8:27 pm

123.
Last edited by chrishasms on Sun Dec 06, 2009 12:22 pm, edited 1 time in total.
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Postby Loobie » Sun May 10, 2009 3:35 am

And conversely, do we know why MS relapses and remits? (OK, maybe we do and I'm showing my ignorance on that one) I'm like Sharon, I have never approached this as a cure. You can look back at all my posts. I've said on tons of occasions "even if this just helps it will be huge", because I have a problem with the only things at my disposal to help are drugs. I know diet and exercise also, but I've been doing those, and my ability to exercise to the point where I feel like I'm doing a lot of good is constantly diminishing.

No false hope here, if it helps me quit peeing the damn bed I'll be ecstatic. Right now my choices there are to take an anticholonergic and get more dizzy, more constipated, and have major cotton mouth which makes me drink more. I already IC, and that helps big time. I just can't make 8 hours even with cathing. So I get up and cath at about 4:00am, but don't always catch it. But I love doing that versus taking a dizzy pill.

Another common theme you will always find in my posts are that ANYTHING I can do that doesn't require me adding another drug to the list of drugs that I have to take forever, that quit working over time anyway, will always go to the front of the class. Is it going to work? At this point I can't say I don't really care, but if it doesn't it won't deter me from following the next thing like this that may give me some hope for symptom relief without drugs. I don't call it false until it's proven not to work. I guess that's why my expectations fall there and not in the camp of 'this is the cure'.

I love the back and forth, but please don't think, for me anyway, that I don't have my eyes wide open.
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Postby peekaboo » Sun May 10, 2009 5:23 am

Loobie wrote:
At this point I can't say I don't really care, but if it doesn't it won't deter me from following the next thing like this that may give me some hope for symptom relief without drugs. I don't call it false until it's proven not to work. I guess that's why my expectations fall there and not in the camp of 'this is the cure'.


I have a list of scenario's

1. worst case - no evidence of venous obstruction therfore this theory does not apply to me.

2. next to worse case: have venous obstruction and have surgery but nothing happens to relieve symptoms

3. next: have surgery and have some relieve of ms symptoms

4. best - have surgery and have many symtpoms relieved (but not all) I will need alot of rehab to build up muscle strength and mobility.

5. best of all - the cure which i do not expect...
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Postby robbie » Sun May 10, 2009 5:34 am

why not do it it can't hurt right? having surgery like this can't induce an attack can it ?
Had ms for over 19 years now.
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Postby mrhodes40 » Sun May 10, 2009 8:08 am

Also I can not understand why revimmune, which wipes out the IMMUNE SYSTEM, seems to be a very effective treatment


this question has been addressed several times actually in depth. Also if you read from the sticky research thread, "The big idea..." and the Simka papers in the supportive section you will know more about this.

MS is an inflammatory disease, no one, not Dr Zamboni, not Dr Dake not anyone questions that. The immune system is active in the lesion area and it is damging the tissue, the brain in addition to the damage that is proposed to be happening from this model.

In venous ulcers it is known that a lot of the damage comes from the immune system reacting to the leaking. However the cure if the issue is chronic venous insufficiency from a blocked vein (and not post thrombotic syndrome or diabetes...) is to unblock the vein. When you do that the area, though it remains scarred, will heal.

I am concerned about people not understanding htis is an experimental model. Obviously, my concerns are well founded because you wandered on to the thread, read some of it, and decided it is giving false hope; that there are promises here that are unsupported, which can only mean that the experimental nature of this was missed by you. Please click the link at the bottom of my email, I added it just yesterday for exactly this reason, and then report back: does that help you see where we are here?

if not what needs to be added to that so you feel comfortable that we are being honest?
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Re: ok

Postby patientx » Sun May 10, 2009 9:33 am

scorpion wrote:I have read a lot from the people in this forum and I appreciate you thinking out side the box. However I do not know of any cardiovascular problem that relapses and remits. Also I can not understand why revimmune, which wipes out the IMMUNE SYSTEM, seems to be a very effective treatment. I understand the excitement in this thread but please guys do not give people false hope. MS is way more similar in its progression to autoimmune disorders than to any cardiovascular diseases I can think of. If I am wrong I will cordially invite everyone in this thread to my beach house on the outer banks. Pinky swear!!!


Marie addressed some of your questions. She's right; if you read Zamboni's papers, he does not claim the immune system isn't actively involved. He offers a theory as to how this could be related to venous insufficiency. But it is just a theory, for now. If he is right, then treatments like Revimmune having a drastic effect isn't so surprising. Shut down the immune system, and this will limit the inflammatory responses.

I think a big part of the problem is in considering MS as just caused by one system. The conventional thinking is it's a disease of the immune system. But it is a fact that there is a breakdown of the blood-brain barrier in MS, which leads to relapses and damage. Yet, no one is really looking into this angle (though that is why Tysabri was developed). To be honest, I've been interested in the CCVSI theory, but I have been looking at it with a critical eye. And I have seen some posts that try to assign vascular cause to all the characteristics of MS. I don't think this is necessary. If the venous issue sets up an inflammatory reaction that leaks into the brain, then the rest of the immune model can be used.

But now I'm really hoping all this pans out - I do really like the Outer Banks.
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Postby robbie » Sun May 10, 2009 9:38 am

having surgery like this can't induce an attack can it ?

I just thought this because over the years here I have read so many things that people think may have caused a relapse for them so I just thought that having surgery may be one of those things but probably not.
Had ms for over 19 years now.
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Postby cheerleader » Sun May 10, 2009 9:45 am

Jeff hasn't had a relapse...thank God. He was in surgery a long time and had IV anesthetics for 5 hours. I was afraid that would make things worse...but so far, so good.

He's still in recovery mode. Head pain level is way down, and he's eating well, back to work and his life. His issues after surgery were headache and nausea from the drastic change in his cerebral bloodflow. Kind of like migraine. But no MS issues.
What's weird is that he's able to sleep thru the night (bladder's holding longer) and his legs are feeling good (spasms are relieved.)
We'll keep you posted-
cheer

(patient x...the break in the blood brain barrier has always been my area of research. That's what directed me to the endothelial health program, and how I met Dr. John Cooke at Stanford. CCSVI explains the mechanism for the break. Stenosis, blockage and reflux, creating slowed perfusion time and edema. As you mention, the immune reaction happens after the break , not before. Heal the break, stop any deposition of t-cells, iron, b-cells, toxins in the brain. Hope you get to the beach house...I've got Malibu, so you can go :))
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Terry » Sun May 10, 2009 10:58 am

why not do it it can't hurt right? having surgery like this can't induce an attack can it ?


I think anesthetic has caused probelms for some in the past, but once the stents are put in, that would negate that issue, wouldn't it? Help, Marie!!?

This may not be the long long fix, but man, it is worth thinking about. I'm doing okay, so I think, well, just wait a while and see, read some more, think. I didn't rewrite my email to the Cincinnati doc. (yet) If I wasn't okay though, (and I do think this would provide relief, (even if just for a while)) I think I'd be a bit more proactive.
It has to be your call, Robbie.
I wish we could lock an open minded MS specialist and Dake or Zamboni or somebody in a room for a week and see what they come up with together.
We could feed them Reeses.
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Postby mrhodes40 » Sun May 10, 2009 11:15 am

Terry LOL!!! reeses hah!

Hi Robbie
I think anyone would be foolish to make a promise about that. No medical person anywhere would because all patients are different.

that having been said, I had a hysterectomy for fibroids last year and that did not cause one, and I shattered my humeral head (broken ball part of the arm bone-shoulder) last fall and that did not either though in both cases I got weak from inactivity.

px said
stents would negate that issue


THEORETICALLY, if CCSVI is the cause of MS lesions, then you could assume that the brain is having trouble all the time getting rid of toxins metabolites etc it wants to because the circulation is poor; the area is kind of stagnant. This may be why we react poorly to chemicals like paints and things of that type with volatile organic compounds in them. But that is theoretical based on accepting the theory, which makes it pure speculation!

and IF this model is right, then restoring circulation can only help.

wobbly and Jeff both did fine no exacerbation only doing better.

As the next few months go by and different people see Dr Dake and report back here, then we'll know more.

Cheer said
headache better


I am SO pleased. Ah. what a relief!
[/quote]
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Postby peekaboo » Sun May 10, 2009 1:20 pm

marie wrote
I had a hysterectomy for fibroids last year and that did not cause one, and I shattered my humeral head (broken ball part of the arm bone-shoulder) last fall and that did not either though in both cases I got weak from inactivity.


boy you're a wreck ....misery loves company ...i'm in menopause too how the heck to you hurt yourself on the arm? hopefully you didn't trip over an ant hill :?
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Postby mrhodes40 » Sun May 10, 2009 1:59 pm

Actually I did. Spent 4 months lazing in a recliner holding it still.

I'm lazy but that was ridiculous................. :lol:

My advice based on that experience is that if you are feeling weaker one day don't keep pressing on; get a cane--or two--or a rollator or whatever, sometimes you win by giving up.
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http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
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Postby scorpion » Sun May 10, 2009 2:38 pm

Hey guys,

I reread my post from yesterday and it was not very well written(could of been the wine I was drinking at the time!) Anyway I really do believe there may be something to all this new research but I guess only time will tell. Hope everyone has a great day!!!
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