How to Understand Remission in CCSVI

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

Postby Lyon » Wed May 27, 2009 4:00 pm

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Postby Terry » Wed May 27, 2009 4:22 pm

I don't know that it feels like anything, Bob. For me, when I am hot or working, my face is red. My chest stays red all the time, but when I'm hot or working, it is really really bad.
An example. My Dad was a collector. Wouldn't throw anything away. He left a large storage unit full from floor to ceiling. I was there yesterday. It was very warm and muggy here in Cincy. A guy had told me he wanted to buy some shelving units, and he saw me there yesterday. Asked if he could get them. I had to unload the shelves, and together we had to move them - tip them b/c they were too tall to go under the door, etc. Lift into the truck. He asked me at least three times if I was okay. Then, did I want to wait until another day? Are you sure? I said, I'm fine, and he didn't believe me. I was fine- just hot.
My face and chest, I'm sure, were lit up. I've had people comment before. Nothing new. But no, no "feeling" for me, just hot.
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Postby Lyon » Wed May 27, 2009 4:55 pm

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Postby Loobie » Wed May 27, 2009 7:28 pm

Yeah, I'm pretty dark complected. Not like an Indian dark, but I get super dark in the sun. No prickling for me. Just hot as hades. Like I said, people would always ask me if something was wrong because I could shower after a run, get my heart rate and respiration back to normal, and I'd still be very red, but only in the face, not in the chest. And my blood pressure is always hovering right around right where it should be. I need to watch it though as my dad had high blood pressure. He also had bad diabetes, was very fat in the gut and had pitting edema. I'm convinced, however, that a lot of his problem was himself. He would salt ham. For real. He would also hide sweets and stuff all the time. We would go into a grocery and he would walk back through the check out line, slam two or three Reese's and pay for the wrappers. His edema got so bad that when he died, it was bursting open. He took care of himself like crap. Not to sound too harsh, but we weren't close at all. He took off when I was about 3 and I didn't see him again until I was graduated from High School. I did get to know him a little bit, but we never got close. He was from Connecticut and of German descent, but he was unbelievably dark complected. Mom's normal complected as is her family, so I have no ginger roots whatsoever.
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Postby Terry » Thu May 28, 2009 6:50 am

I wonder if there are more bad veins than the jugs and azygos. If the redness is a sign of more reroutes- red blood cell showing up near the skin?
Does this make medical sense at all?
I wonder about the veins at the top of the head and it seems it is not checked.
The ones in the chest/ shoulder area. Not checked? A spill from that might cause my chest redness.
Just wondering. Oh that I were a research whiz.
Why, though, would we think that a problem like this would manifest in only three veins? I understand why the docs zeroed in on these veins, as they are the ones that would cause the MS activity, but couldn't the problem actually be larger than that?
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Postby mrhodes40 » Thu May 28, 2009 6:56 am

I've had the "beet reds" since a child also. with exercise it was always remarkable to anyone near me...
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 Terry » Thu May 28, 2009 7:37 am

It occurs to me that b/c of Jeff's petechia, Cheer wouldn't think this involves only the three veins. Cheer, am I correct?
I don't think this is a congenital thing.
I really believe the stenting will work for MS, but I think more will have to be figured out as to the why. We wouldn't want it to return and we wouldn't want it going on all over our bodies. As far as I can see, the EBV, D, CPN, etc are still on the table.
I don't meant to sound like a doubting thomas, b/c I really don't doubt this. I just think there is more to the story. Apologies if I offend anyone.
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Postby Loobie » Thu May 28, 2009 7:41 am

No offense here dudette! For me I'm looking at this as a route to some symptom relief and to get someone to fix some clogged plumbing. Anything over and above that is the gravy, but you are right. Is this the primary and everything else sec. and tert. and so on? I guess time will tell on that one.
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Postby Terry » Thu May 28, 2009 8:07 am

Lew, I absolutely believe this will help you. I cannot wait for you to have this done and to hear how things have changed. I believe they will.
Dudette. lol. Waiting for the rain and humidity to stop. The weather is nasty. Same in Dayton?
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Postby Loobie » Thu May 28, 2009 8:26 am

Oh yes. I just love it when I walk out into the shop and my glasses completely fog over since it's so damn humid. Not my cup 'o tea!
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Postby cheerleader » Thu May 28, 2009 12:25 pm

Terry wrote:It occurs to me that b/c of Jeff's petechia, Cheer wouldn't think this involves only the three veins. Cheer, am I correct?
I don't think this is a congenital thing.
I really believe the stenting will work for MS, but I think more will have to be figured out as to the why. We wouldn't want it to return and we wouldn't want it going on all over our bodies. As far as I can see, the EBV, D, CPN, etc are still on the table.
I don't meant to sound like a doubting thomas, b/c I really don't doubt this. I just think there is more to the story. Apologies if I offend anyone.


Terry....you're absolutely right. No offense taken at all... The thing that got me going on the vascular connection was Jeff's petechiae on his legs, and his high liver enzymes. We actually looked at Jeff's lower veins at Stanford, and all was clear to his liver....BUT I think what we are going to learn, is that when MS patients experience a flare, their entire circulatory system is affected. I've posted this on other threads, but high liver enzymes at presentation of flare is common. Neuros just haven't considered it important before. They've been staring at the brain to the exclusion of the rest of the body.

Here's the rub. It looks like Jeff and Marie were born with defective jugular veins, and that it is an anatomical issue for them. For them, it's congenital. For everyone? Too soon to tell. Cpn or ebv didn't create their venous problems, but viruses and bacteria can harm the endothelial layer of blood vessels and make a vascular problem WORSE. So, if you have this anatomical problem and then you throw in all the nitric oxide baddies (bad fats, virus, bacteria, smoking, high altitude, etc.) you will get an MS flare and damage. And it will probably affect your whole body. The MS lesions will show up in your CNS, but you may also get petechia, or weird blood test results. It's all one, connected body.

hope that makes some sense...
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby LR1234 » Thu May 28, 2009 1:05 pm

If CCSVI is the result of MS rather than the cause (which we all hope it isn't) could lesions in the spine/brain cause a reduction of blood flow leading to pressure and stenosis of other veins? I have a lesion in my cervical spine, could that lesion and the occlusion it is causing with my spine cause the picture of CCSVI?

Just wondering......
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Postby cheerleader » Thu May 28, 2009 1:25 pm

LR1234 wrote:If CCSVI is the result of MS rather than the cause (which we all hope it isn't) could lesions in the spine/brain cause a reduction of blood flow leading to pressure and stenosis of other veins? I have a lesion in my cervical spine, could that lesion and the occlusion it is causing with my spine cause the picture of CCSVI?

Just wondering......


In Jeff and Marie's instance (and maybe others who will be tested) they were born with crimped jugular veins. We know which came first. In venous ulcers on the leg, which we can see, the vein stenosis comes first, not the ulcer. Lesions wouldn't change/reflux blood flow...reflux would cause lesions.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Thu May 28, 2009 4:50 pm

could lesions in the spine/brain cause a reduction of blood flow leading to pressure and stenosis of other veins


Yes it can cause problems--- but it would be on the OTHER side of the brain circulation.

It is known in the medical world that people with cirrhosis of the liver get scarred areas that make it so the blood can't get through the vessels in that hardened scarred area well.

The vessels in the area where the scars are can't stretch or flex, they are rigid, tight, small and inflexible. as a result the nomral volume blood can't get through there, and it backs up causing stretched vessels on the downstream side of the liver in the esophogus, which are called esophogeal verices.

These can kill alcoholics, and they are caused by those hardened scars in the liver, there was actually nothing wrong with the esophogus except that it was down stream from the liver...in other words in terms of circulation the blood flows from the heart through circulation to the esophogus first then into the liver, but because the liver is all hard and the blood can't get through, the thing that gets hurt is the perfectly healthy esophogus vessels because the blood os backin up all the way to there.

So it could be possible that MS lesions might cause a problem BEHIND them in the circulation. The hardened areas might be able to cause a backup in the same way.

But that would be on the arterial side for anatomy to allow that to happen. That is not where these stenoses are.

These stenoses as Jeff and I had, as well as the stenoses Zaomboni documents are on the OTHER side of the brain, upstream from the brain.

It is almost like you are looking at a pond that has a stand of aspen on its edge that is flooded where the trees are dying and wondering if the dying trees caused the beaver dam that is blocking the creek.....

The fact that these stenoses are downstream of the lesion means that they are not actually vulnerable to anything going on in the lesion area, it has to be the other way around...in the same way that the beaver dam on the creek can't cause a problem 1/4 mile downstream--even though it is causing havoc behind it, upstream.

The only way there could be some kind of connection is if you argued that there is a system wide inflammatory response which causes both brain lesions and these stenoses. however, people treated with suppressives have just as many and just as bad stenoses as untreated people so that possibility is really unlikely.
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 Sharon » Thu May 28, 2009 7:50 pm

Terry you wrote:
As far as I can see, the EBV, D, CPN, etc are still on the table.


I would agree with you, but I think we may now have a new dynamic with CCSVI. If someone has CPN or EBV and their blood has the virus, and then that "yucky" diseased blood is getting reluxed into the brain or the spinal column because of a senosis, the immune system is going to react -right? So, yes a virus could be involved with the MS attack but it was not the initial problem.
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