How to Understand Remission in CCSVI

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

Postby cheerleader » Tue Jun 02, 2009 1:19 pm

notasperfectasyou wrote:Bunch of Thoughts

1) Vasoconstrictors and Vasodialators. I take Lipitor, I can relates to this. Most all of us take a lot of sups. So far it looks like NAC improves blood flow. This might need it's own thread.

Here's a thread on CCSVI regarding this specific subject
http://www.thisisms.com/ftopict-7272.html

2) Heredity? Cheer used the words "born with" a bit back. There's a lot of studies of MS within families. Hummm....

Certain populations have a higher propensity to chronic venous insufficiency (northern European)...we may find some genetic correlation with the HLA-DR15 haplotype-already strongly associated with MS (also northern European) and venous insufficiency.
http://www.ncbi.nlm.nih.gov/pubmed/17329717

3) In a pathology that involves bacteria, I'm not sure that I can agree that vascular issues precede the bacterial issues. I'm open to playing chicken and egg. Marie is likely in the best position to explain this to me.

Ken- still of the mindset that venous insufficiency can be exacerbated by bacterial and viral infections, as well as many endothelial disrupters....and relapses in MS will occur as a result of infections. I still believe the blockage comes first and is of a genetic mutation....nothing in the research yet to prove otherwise.

4) I have not googled for this yet, but thought hit me - Stroke. Shouldn't stroke somehow be related to CCSVI? I don't really know much about stroke, so I could be totally off on this wonderment.

Stroke is related to arterial disfunction and clots. MS appears to be more correlated to veins and stenosis (simple narrowing of the passageway.)
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Tue Jun 02, 2009 1:36 pm

I have not googled for this yet, but thought hit me - Stroke. Shouldn't stroke somehow be related to CCSVI? I don't really know much about stroke, so I could be totally off on this wonderment


No not the same at all because a stroke is when the blood vessel going INTO the brain with oxygen gets blocked suddenly and entirely resulting on no O2 to the area which kills the tissue there outright immediately. In the CCSVI model O2 is getting in but the deoxygenated blood is having trouble escaping, so tissue does not die outright but it gets sick because all the junk the blood os suposed to take away is stuck in there and fluid is leaking. It is also true that there is probably some impact on O2 delivery secondary to this but it is not complete total blockage.


In a pathology that involves bacteria, I'm not sure that I can agree that vascular issues precede the bacterial issues. I'm open to playing chicken and egg. Marie is likely in the best position to explain this to me


If it includes bacteria they certainly may be the cause these stenoses. CPn is a vascular bug and is always present in atherosclerotic plaques; why not venous stenoses then? It also clings to vessel walls and easily adheres causing vasculitis and damage to the endothelium. My own GP thinks there is a bacterial issue here as well as a venous one.

Additionally if you have a pathology like mine which is obviously from birth, then the blocked veins may allow more acces for something like CPn to the sick area, it can adhere to the vessel wall and cross right in to the soggy damaged brain tissue. Venous ulcer tissue is prime for germs because it is so poorly circulated. IT is known that CPn likes brain tissue and can set up housekeeping there very well. This is a both and idea, antibioitcs helped me a lot and I can easily agree there is something there to know.

I also think it is possible some people's stenosis could be removed via antibiotics if it were bacteria caused in that case. Sarah feels this must have happened in her case as she used to have prominent veins in her temple area that appeared in tandem with her illness and which disappeared after abx treatment. She has had no recurrence of MS type symptoms in the ...must be 6 now ...years since treatment with abx.

These things will be more well known with time. Other people who have been treated with abx and some success will also add to that body of knowledge. I am one who had them for 3.5 years altogether, but I did progress on them...obviously CCSVI is the prime suspect for tht!
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http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
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Postby notasperfectasyou » Thu Jun 04, 2009 10:49 am

I went back to Cheer's book to look for NAC. When I started looking up vasoconstictor and vasodilator, the very familiar NAC popped up. Marie will know all about NAC, but here it is again! It opens veins! As best as I can understand it's also combined with nitroglycerin for this. So I have to ask Cheer if NAC was ever considered. I think it ought to be considered here in this forum. Personally, I'm thinking of adding NAC and Ascorbic Acid to my routine for cholesterol. Note: Kim's taking 5 grams of both, daily.

I went back and looked, while stroke is definitely before the capilaries, Atherosclerosis can on rare occasions show up after. Isn't that interesting? I mean, MS is rare too. You don't need high probrability occurances to get to MS.

Marie, I'm rooting for a cure here. I think we have a most similar perspective and we come from the same place. I do think you are way ahead of me in having an understanding of how all this fits together. I'm sure more than 80% of my "newly" found articles are "been there, done that" for you.

There is a lot of background we understand that I feel (and I think you suspect as well) ties bacteria, atherosclerosis, ICAM-1, CCSVI, BBB, etc. all together. It's a huge process just explaining how bacteria can cause MS. Now trying to take a jump to a whole new place, I don't know the pathology of venous stenosis, but I suspect that it's possible that some co-factors exist between pathologies.

The follow up thought is, if you have cpn in your cns and the only entrance for abx is closed up, does any residual cpn get to live there and multiply unhampered? I think you know where I'm going with this. Ken
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Postby mrhodes40 » Thu Jun 04, 2009 1:50 pm

co factors exist between pathologies

Yes there is. Same players over and over.

As for closing up, let's hope not. Time will tell if treated people need something more or not......... if so then abx is a possibility.

But htis thread is remission in CCSVI so I leave it at that we can PM if you like more on it, or go to the abx/ccsvi thread in abx section
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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
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Postby akaheather » Mon Jun 08, 2009 2:07 pm

One thing that I keep coming back to is the unique and personal pattern every MS patient has- people connect different experiences with their diagnosis.... Jimmy remembers being OK until a Hep B vaccine, Jeff was doing OK until a trip to Salt Lake City (high alt) and stress, Lars was fine until a high altitude trek and illness, fill in your own story here....What brought you into the doctor's office, into the MRI tube, and to an MS diagnosis?


Here's what I have been thinking:

How long would it take for a lesion to be formed?

I didn't have my 1st exacerbation until 6 weeks after the birth of my son.

Secondly, the day before my 1st exacerbation I was SOOOO tired. Not just TIRED, tired. Freakishly tired. So tired that I could barely keep my eyes open while having lunch with a friend. I went home and slept most of the day. The very next day my vision was blurred. It was weird.

Thirdly, while I usually get migranes at least once a month, they are always behind my left eye. I wonder which of my jugulars will be blocked and if there will be/could be any correlation.

And finally, for the past month I have been extremely light headed. When I bend over to pick up the baby or something I really have to be careful. 8O When I am out in the heat it is way worse and I few times my vision has partially"blacked out" because of it . 8O 8O I am strongly aware that this cannot be good. :( I'm wondering how strongly connected this could be to the CCSVI theory.
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Postby Sharon » Mon Jun 08, 2009 2:55 pm

aka you wrote:
Thirdly, while I usually get migranes at least once a month, they are always behind my left eye. I wonder which of my jugulars will be blocked and if there will be/could be any correlation.


I know what you are talking about - the pain behind the left eye - I also had pain alongside the left side of my nose. I have a picture of the veins in the head and the chest. It shows a secondary vein (called the facial vein) shooting out from the jugular - placement would be just above the mid part of your neck. This is where my blockage was. My facial vein was blocked because the jugular was blocked. I will try to find the picture on the Internet again and post it for you.
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Postby Sharon » Mon Jun 08, 2009 3:45 pm

aka - here is the image

Image

Hopefully, you will get a better idea with this picture

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Postby mrhodes40 » Mon Jun 08, 2009 4:33 pm

THAT is the best picture yet...lots of veins not in there like vertebarals and the cerebral ones but it does show the main idea. Jugular blocked and all those superficial veins back up as well as the deep cerebral ones.
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 javaneen » Tue Jun 09, 2009 7:06 am

I am not sure if my story fits but here goes....my first feeling of very slight tingling in my finger tips was back in 2003 when I was training for a marathon. I just assumed I pinched a nerve and it went away after I stopped running so much. The second time I ever had any MS symptoms was when we were moving to our first home. We moved in Dec. 05 and in January I was painting and I felt a little dizzy. A week later I came down with the worst sinus infection I ever had and was laid up for over a week. I started an antibiotic and after taking it twice I had severe vertigo. I am an audiologist specializing in the ear, hearing and balance so I had my colleagues put me through a bunch of tests. They diagnosed me with Neuritis - an acute viral infection attacking the balance nerve. I however, knew that this didn't fit with my symptoms as my dizziness felt more central rather than peripheral. I suddenly started having problems speaking and moving my hands so I knew right away that it was probably MS. Finally in March after the MRI and spinal I received my dx.

The only other time I had symptoms was 7 months after I had my son. I did not have any exacerbation at all until I stopped nursing and got my first period. As soon as I got my first period I started to feel tingling in my legs.

I am currently doing once a month IVIG and Steroids because the interferon wasn't working and I had a severe anaphylaxis reaction to copaxone (which I was on before having a baby without a problem). So here I am now, feeling great and excited about all this information regarding CCSVI.

Not sure if this fits with CCSVI and first symptoms or not. What do you all think?
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Postby akaheather » Tue Jun 09, 2009 10:37 am

It makes you wonder how long/severe would the leakage have to be before the immune system would begin it's attack or, I should say, before we would notice that the immune system was attacking. 6 weeks, 5 months, 7 months? I doubt it is a matter of days, but I could be wrong.

Would it depend on how severe the leakage is? The location? The strength/weakness of your immune sytem?

Also I'm wondering still about the mini-exacerbations caused by heat and/or anxiety. In my little pea brain I am imagining those little veins swelling up and pushing on/maybe leaking on an existing lesion. :?: Any other theories?

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Postby mrhodes40 » Tue Jun 09, 2009 10:53 am

I also wonder exactly how long it takes for the inflammation to result in noticeable symptoms. a lot of studies show that people have lesions with no new symptoms often; might that be because the lesion shows sometime before the symptoms do?

my .02 is that the heat qustion is complicated a little bit there are several things in play.

1 All nerves in all people work less well in heat; it slows conduction and an MSer has slow nerves to work with so to the extent we have permanent nerve damage we will ALWAYS have some difficulty with heat.

2 we don't cool our heads as efficiently as healthy people. The emissary veins cool the head---------they drain to the jugulars or vertebrals so to the extent that blood is not getting out, heat is staying stuck too.

The combination means that we have hot heads that are hotter than other people's AND we have funky nerves that do not conduct well to begin with now having heat slowed conduction on top of that.

After treatment the head should cool more efficiently and I do have more heat tolerance since the procedure. that is the most obvious thing I have so far as far as results.
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 » Tue Jun 09, 2009 4:59 pm

Sorry folks about the size of the post page getting increased. It is because of the image I posted. If someone tells me how to fix it, I will, or I can delete the image and post the link

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Postby chrishasms » Tue Jun 09, 2009 5:36 pm

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Postby Sharon » Wed Jun 10, 2009 7:46 am

Those painful aches above your eye or at the side of the nose.......I suffered with them for a long time. Then, in the past year or so they went away --I am wondering now if the body had finally found new vessels to drain the blood. Anyway, in my recovery, I have had those sensations come back, but it is lessening each day and it was only sporadiac anyway. It is all very interesting!
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Postby chrishasms » Wed Jun 10, 2009 8:08 am

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