Rewriting the MS story

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

Postby daniel » Fri Jun 12, 2009 1:37 pm

cheerleader wrote:...snip...
I believe Jeff's brain was oxygen starved for many years, due to the inadequate drainage and slowed perfusion time. The med. term for this is hypoxia. It happens to folks with altitude sickness, diving sickness and those deprived of enough oxygen for the brain...

You're right, Sharon. The immediate relief Jeff has experienced in his levels of fatigue and his newly elevated mood after receiving stents, shows me that his cognitive issues were not due to lesions....however, this hypoxic state may be creating the lesions, as well...and they may heal with new oxygen levels.
...snip...

cheer


cheer, would this be why HBOT (hyperbaric oxygen chambers) seem to help some people with MS? Did Jeff every try one of them before his stents?

Edit: Ooops I jumped the gun and hit reply before finishing reading the thread and missed MaggieMae's comment. Apologies!

Dan
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Postby cheerleader » Fri Jun 12, 2009 3:08 pm

daniel wrote:
cheer, would this be why HBOT (hyperbaric oxygen chambers) seem to help some people with MS? Did Jeff every try one of them before his stents?

Edit: Ooops I jumped the gun and hit reply before finishing reading the thread and missed MaggieMae's comment. Apologies!

Dan


Hi Dan...
Welcome to the site! And to the CCSVI party :lol:
Jeff never did HBOT, and to be honest, it wouldn't have helped much. Without venous return of blood from the brain back to the heart, the relief would have only been temporary...and the damage would still continue as soon as he left the chamber. But many HBOT pioneers were on the right track.

I've read up on the work of Dr. Philip James of Dundee, Scotland...who is a big proponent of HBOT therapy. I've sent him Dr. Zamboni's studies, but no reply.

The same immunologic markers as in MS have been shown to occur at the same levels in stroke , which is clearly not a viral or autoimmunedisease. Dr. Philip James of Dundee, Scotland, proposed decompression sickness as a model for MS, based on pathology and clinical course. James also suggested fat emboli as the counterpart of gaseous microemboli in everyday life and a possible etiology of a primary vascular lesion (endothelial damage)in MS. If MS is the result of a “wound” to the CNS caused bycirculatory impairment, then the efficacy of HBOT would not be surprising.

http://www.jpands.org/vol10no4/neubauer.pdf

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Fri Jun 12, 2009 3:54 pm

My wandering mind took me to this thought-not strictly related to the HBOT but more just a look towards evidence that a new model makes sense and we are not crazy to doubt the old one given the new understanding that stenses are there.

Here is something on stroke which is different than CCSVI because in that case oxygen does not get IN and that kills brain cells quickly, where as in CCSVI, the blood is backed up and not getting out which means congestion. Oxygen is getting in, even though there is still some mild ischemia (lack of oxygen) just becuase of the back up.

quote on stroke from HERE

ABSTRACT
Ischemic stroke is a leading cause of death and disability in developed countries. Yet, in spite of substantial research and development efforts, no specific therapy for stroke is available. Several mechnism for neuroprotection have been explored including ionchannels, excitatory amino acids and oxygen raicals yet none has culminated in an effective therapeutic effect. The review article on "inflammation and stroke" summarizes key data in support for the possibility that inflammatory cells and mediators are important contributing and confounding factors in ischemic brain injury. In particular, the role of cytokines, endothelial cells and leukocyte adhesion molecules, nitric oxide and cyclooxygenase (COX-2) products are discussed. Furthermore, the potential role for certain cytokines in modulation of brain vulnerability to ischemia is also reviewed.The data suggest that novel therapeutic strategies may evolve from detailed research on some specific inflammatory factors that act in spatial and temporal relationships with traditionally recognized neurotoxic factors. The dual nature of some mediators in reformatting of brain cells for resistance or sensitivity to injury demonstrate the delicate balance needed in interventions based on anti-inflammatory strategies


Once again it is seen that antiinflammotory approaches being helpful does not prove autoimmune pathology. We know well what causes stroke and it ain't no immune system!
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Postby mrhodes40 » Fri Jun 12, 2009 4:01 pm

ANd another thought experiment HERE

Abstract In contrast to arterial stroke, cerebral venous thrombosis (CVT) is an infrequent condition which presents with a wide spectrum of signs and with a highly variable mode of onset. The clinician must therefore consider it systematically in all brain syndromes and perform the appropriate neuroimaging investigations: computed tomography (CT) with computed tomography angiography and/or magnetic resonance imaging with magnetic resonance angiography and, if necessary intra-arterial angiography. Once the diagnosis is established, a wide investigation for should be carried out in search of the cause, and treatment started as soon as possible. Treatment is based on the combination of intravenous heparin (followed by oral anticoagulants for 3–6 months), symptomatic treatment (anticonvulsants, analgesics, treatment of increased intracranial pressure) and treatment of the cause. Local thrombolysis is indicated if there is deterioration due to thrombosis extension despite adequate anticoagulation. Diagnosis and treatment of CVT should be considered as an emergency because of the considerable potential for full recovery in this condition.


So this is a case of sudden 100% occlusion of a vein in the head...and it is a medical emergency. In this case the occlusion is a big clot blocking the veins so it is dissolved with heparin and warfarin.

So in what way is this similar to a stenosis? A stenosis blocks a vein but not suddenly, not usually 100% and not with a clot that can be dissolved. A stenosis is also not a clot that can break free and cause a stroke so there is less of an urgency about that kind of thing. However it is clear that one of the main concerns is to restore blood flow on the venous side so the blood flows easily and the brain tissue can be saved.
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 mrhodes40 » Fri Jun 12, 2009 4:46 pm

Lord I cen't believe I am burying my own post but this one is super -duper great

HERE

The ultrastructural changes of cutaneous and subcutaneous capillaries and venules in 6 cases of severe, chronic venous insufficiency were examined. The findings in all cases consisted of numerous and characteristic alterations of the vessel wall structure and of the pericapillary space which are supposed to be due to the increased intravenous pressure.


Did I mention my pressure on the brain side of the stenosis dropped after the stent was placed?

The intercellular spaces are enlarged to wide channels through which erythrocytes pass into the perivascular spaces. Microvesicles occur in great numbers, they are arranged in chain-like formations and seem to come together to form transendothelial channels. Around the capillaries, edematous fluid with proteins and erythrocytes accumulates. Phagocytosis of erythrocytes, siderosomes and collagen fibrils by macrophages is observed. Within the endothelial cells there is an abundance of Weibel-Palade bodies and of multivesicular bodies. The former are frequently seen in contact with the luminal cell membrane. Weibel-Palade bodies are believed to be involved in the clotting mechanism.


This one is so full of stuff I will have to break it down a little
first
The intercellular spaces are enlarged to wide channels through which erythrocytes pass into the perivascular spaces.


means that the red blood cells can pass through into the tissue because of the venous backup.....

Microvesicles occur in great numbers, they are arranged in chain-like formations and seem to come together to form transendothelial channels


means tiny blood vessel like structures are created that make channels through the endothelium making it leaky...so it's like your pipe is now like a soaker hose instead of a tight line.

Around the capillaries, edematous fluid with proteins and erythrocytes accumulates
this means fluid goes into the tissue (brain in CCSVI)............. can anyone say "enhancing lesion??" because Gd will go right through there in that site.

Phagocytosis of erythrocytes, siderosomes and collagen fibrils by macrophages is observed
this means the immune system comes in to clean up.

Ok then add that to this comment from the paper "MS is a neurodegenerative disease a thought exeriment" by Timothey Vartanian MD (my personal collection) from a table showing a pattern of demyelination
degeneration of distal oligodendrocyte processes followed by oligodendrocyte apoptosis and demyelination


that means the arms of the oligodendrocyte that are farther way are damaged and it causes the whole oligo to die as a result...it can't survive an arm being cut off

and NOW add to that the idea I mentioned before based on Schellings paper page 30 where he mentions and references that different authors have put forth the idea that only if there is inflammation first can there be demyelination and you can see how the fluid leaking out through those microvascular would push the oligodendrocytes away frone the axons and break the "distal processes" (the arms that are farther away) which are warpped around the axons. Suddenly the whole oligodendrocyte would be gone and so is the myelin.

I feel like a quick draw old west sharp shooter zinging stuff at the autoimmune theory---Feeeeew...feww..fewww...fewww blow the smoke off my guns and spin em back to my holster.....
this is speculative of course..........
think so?
marie
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 cheerleader » Fri Jun 12, 2009 5:06 pm

mrhodes40 wrote:
I feel like a quick draw old west sharp shooter zinging stuff at the autoimmune theory---Feeeeew...feww..fewww...fewww blow the smoke off my guns and spin em back to my holster.....
this is speculative of course..........
think so?
marie


Go Marie!!! Love it all. Everything makes sense. Just checked the time. Isn't this the time of day you'd usually be "a wilted flower" ? Seems like someone has a bit more energy today- thanks to better bloodflow~! :lol:
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Fri Jun 12, 2009 6:35 pm

Yes it seems I do have more energy I used to call it a day--honest--at 7pm I would go to bed. Every day. then relax in there with Modern Marvels til 8 so I'd feel like a self respecting adult, at which time I'd collapse into sleep if I had not done so mid-marvel and Bill had to turn of the tv. That is different.

Last night I was 9:30 and the night before read a book until nearly 10. Bll went to bed first.
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 » Fri Jun 12, 2009 7:30 pm

Speculative --maybe so? You are amazing - I am so thankful that I am along for the CCSVI ride - you (and Cheer) are making this so much easier.

I'm off to bed with Loobie's book "Man's Search for Meaning" - it is really interesting.

Sharon
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Postby Loobie » Sat Jun 13, 2009 5:47 am

Marie,

you crack me up. I can almost feel your enthusiasm. I have a mental picture of you just sitting there all excited finding this information. Bouncing up and down in your computer chair and clapping and giggling. It's so much fun to look forward and be enthusiastic. I don't know what's going to happen, but if nothing else, this is turning out to be one hell of a respite.
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Postby mrhodes40 » Sat Jun 13, 2009 8:06 am

Bouncing up and down in your computer chair and clapping and giggling. It's so much fun to look forward and be enthusiastic. I don't know what's going to happen, but if nothing else, this is turning out to be one hell of a respite.


you have the picture pretty well clearly-I'm a a nerd :oops: , I should have been a research assistant or even a researcher. I agree about the fun ride even if it is not the "cure". It has been a very bad year for me what with the shattered humeral head ( ball of the arm bone) and being totally disabled suddenly as a result. I could not even drive for 6 months. I really needed a fresh perspective myself and am grateful for this.

It is actually true that the thing I like best about it is that it is different and has a verifiable feature in the apparent fact of stenosis. It means in my mind that all the former MS research is game for new eyes and new evaluation coming from this perspective.

I will be terribly disappointed if it turns out this is not any help to MS so we are smart to keep our "tovaxin low expectation glasses" on. :wink:

BUt the chances of that seem slim to me. If you restore blood flow to normal parameters should'nt that be at the minimum better, even if not a cure? How can it be argued it is better to leave it backed up? my mind keeps going over that ground and returning to it has to at least help the situation.
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 Loobie » Sat Jun 13, 2009 9:32 am

The one conclusion that all of these "exceptions" to the autoimmune model really have me thinking that the AI side of things is really nothing more than a staus quo accepted theory; not fact. I mean the absence of the anigenic target (thx, M), the fact that "scars" are the result of something, makes me question what that 'something' is. I mean I suppose it could be "autoimmune activity" that makes the scars, and that may be true. But why in the hell is the autoimmune activity happening? To me that's the $64,000 question, as it has always been, ie what's the 'trigger'?

I'll tell you one thing though Marie. Enthusiasm beats despair any day of the week.
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Postby chrishasms » Sat Jun 13, 2009 10:09 am

123
Last edited by chrishasms on Sun Dec 06, 2009 12:54 pm, edited 1 time in total.
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this

Postby wobbly » Sat Jun 13, 2009 10:15 am

this is the real deal/ i no 4 sure that this at the least will be a staple of treatment [ whether 2 stent or not might be an issue] but why not i with out a doubt feel better in the head / my majority of physical problems r with the legs[ 4 big spinal lesions ] i think those scars cant be fixed but it does seem like the brain will recover/ my 1 and only brain lesion affected my sense of smell and taste and that has come back alot it was b4 the liberation so who no s TY 4 25 infusions might have something 2 do with it / but this deal gives relief/ AND WE NEED THAT :idea: :idea: :idea: :idea:
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Postby peekaboo » Sat Jun 13, 2009 11:27 am

cheer wrote:
Or, the lucky folks who have only a small bit of occlusion, (benign MS)- tell you it's because they drink red clover tea or wear crystals and they write and sell thousands of books to hopeful MS patients (Yes, Ann Boroch...that's you.)


I actually like her book w/ lot of supplemental suggestions...what did I miss? i can be nieve at times...
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Postby skydog » Sat Jun 13, 2009 6:28 pm

I liked her book better than all the rest of my rather large library of snake oil remedies and treatments. Lot of good common sense in her writing. Big problem is if you took all the supplements she deemed necessary I don't think you would have room for a meal. That seems to be the case with most of the books and e-books I have read along the way. Tried them all but love a good read. Now I really wasn't impressed at all with Montel's book but read it just the same. Big garden full of biodynamic organic food and treat the CCSVI. We are writing the book to end all books right here right now. Peace and Health All Mark
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