Buffalo Study Healthy Controls

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

Postby malden » Thu Sep 23, 2010 1:06 pm

cheerleader wrote:...If you were found to have an occluded carotid artery... If you were found to have an occluded hepatic vein, you would be treated. How are most of these venous or arterial disease detected? AFTER damage has been done to the organ they feed or drain. Docs don't go looking for venous or arterial disease on a whim. There are indictions. Same with CCSVI/MS...


I have MS and I fall down and broke my leg... I would be treated.
I have MS and get cold... I would be treated.
But that treatments are not in relation with my MS... It's still here!
So it's CCSVI.... 25% of healty population have it.... let's treat them all.... CCSVI is cured... but MS still remains!

If you have MS and CCSVI, and cure CCSVI, CCSVI fatique will gone (perhapse, if you'r lucky and you don't restenosed) but MS fatique will remain. Thats what good doctors are teling us. (do you need quote?)

So, what's the point of treating CCSVI for MS patients?
We have bigger problems than fatique... If you can't fix it (MS)... why bother with this? 10000$ for fatique? I can rest a lot for this money.
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Postby Johnson » Thu Sep 23, 2010 3:38 pm

Malden wrote:
According to Buffalo study, 1/4 adult people on the Earth have those "malformations". This is not up for debate.
No, it means that 25% of the people in the study have CCSVI to some degree. Since some of the controls were family members (and thus, more likely to have a predisposition to the condition), some had other neurological disease, CIS, etc., I don't think you can extrapolate to that being 25% of the global population. Within that group are all sorts of complex variables - physical traumas, psychological traumas, childhood illnesses (and severity differences), who smokes and who does not, different diets, sexual partners, alcohol consumption, and on and on.

It is pretty evident that CCSVI and "MS" are strongly linked - anecdotally and clinically. It is common sense that occluded veins are not normal, even if common. So fix them - especially if they are causing disability. I am now far more curious about what causes CCSVI. I am trying to get to the bottom of that in my own self. I had (and have again) severely blocked jugulars, which were opened with balloons. I felt fantastic. Balance problems were resolved, fatigue, cognitive problems, and many positive unexpected changes. It was not placebo because you can't placebo me unless I mentally co-operate. I have a different approach going into the second round in that I am now taking an angiotensin II receptor blocker which has some immune modulation effects to boot. (link), as a part to a longer-term protocol to go after chronic infection - which I believe may cause the CCSVI in myself. I've upped my B3, nattokinase, E8... too.

/babble
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Postby scorpion » Thu Sep 23, 2010 5:56 pm

cheerleader wrote:
If you were found to have an occluded carotid artery, you would be treated.
If you were found to have an occluded hepatic vein, you would be treated. How are most of these venous or arterial disease detected? AFTER damage has been done to the organ they feed or drain. Docs don't go looking for venous or arterial disease on a whim. There are indictions. Same with CCSVI/MS.

cheer


Cheer this is not accurate.

Mayoclinic says:

"In most instances when a carotid artery is completely blocked, the risk of a revascularization procedure usually outweighs the benefit. Fortunately, the brain has great capacity to use alternative routes to provide blood to the area of the brain supplied by the blocked artery. A network of blood vessels at the base of the brain, called the circle of Willis, can often supply the necessary blood flow.

Many people function normally with one completely blocked carotid artery. "

From the Clevland Clinic

" It is true that in general arteries that are 100% occluded are not corrected because of "collateral circulation". What this means is that new blood vessels have found their way around the blockage and are providing blood flow. "

"You have four arteries feeding the Circle of Willis that supplies blood to the brain. 3 or even 2 arteries are enough to supply blood to the brain. Ask your doctor about why they didn't inform you of these facts. Blockage by itself is not the problem, tearing of the plaque causing the blockage is the real problem. Ask your doctor to give you the complete explanation."


Scorpion says:
Please if you are not sure of what you are talking about do not state something as fact. We are not, including me, experts in medicine.
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Re: Controls in MS Trials

Postby sbr487 » Thu Sep 23, 2010 8:32 pm

cheerleader wrote:I'm sorry, sbr, but what else should we rely on? Yes, I do think we need to consider genetic studies. Geneticists and scientists would agree. I heard Dr. Ferlini speak in Bologna last year---there is a very strong, undeniable correlation of CCSVI and venous malformations on the HLA locus 6p21.32 She was surprised to note this, but the multiple shared CNVs were with MS.
Here's another study on this specific chromosome and the relationship to MS.

And I'll try this again. I agree with Mark. There is a GENETIC PREDISPOSITION to MS. This does not mean everyone with this genetic predisposition will develop MS. Not everyone with a genetic predisposition to heart disease needs quadruple bipass surgery. Only the unlucky ones. Many of us get by with genetic predispositions to cancer or obesity or lung disease and we never get seriously ill. But eventually, we will all die.


Point taken :)
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck
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Postby thisisalex » Thu Sep 23, 2010 11:39 pm

scorpion wrote:Cheer this is not accurate.

Mayoclinic says:

"In most instances when a carotid artery is completely blocked, the risk of a revascularization procedure usually outweighs the benefit. Fortunately, the brain has great capacity to use alternative routes to provide blood to the area of the brain supplied by the blocked artery. A network of blood vessels at the base of the brain, called the circle of Willis, can often supply the necessary blood flow.

Many people function normally with one completely blocked carotid artery. ".


just a few notes:

the arterial system is a high pressure system which means for me that the blood finds it's way to the brain even with a blocked artery, because of the high pressure. But the venous system is a low pressure system. it needs free pathways to flow back to the heart... quite a different situation i think

and by the way: did anyone follow up those people with blocked arteries? what happened to them after 20 years? a famous surgery said to me a few months ago: they used to close the jugular vein sometimes, when it was easier then fixing it...

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Postby Johnson » Thu Sep 23, 2010 11:58 pm

...they used to close the jugular vein sometimes, when it was easier then fixing it...
Yikes... Hilly-billy Med-sun Hoe-spit-all
'Uh gut a hole in my raid-yator. Uh think if ah just crimp offen the hoses t' th' en-jin, it wurnt leak nimor. Makein' cents t' mee'

I always wonder how informed informed consent is, and how informed it can be. And then, the ones informing, and how informed they are.
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Postby malden » Fri Sep 24, 2010 12:10 am

thisisalex wrote:...a famous surgery said to me a few months ago: they used to close the jugular vein sometimes, when it was easier then fixing it...

alex

Yes, that's right, it's known procedure:
http://www.evmsent.org/neck_dissection.asp
Effect of removing the internal jugular vein, the spinal accessory nerve, or the sternocleidomastoid (SCM) muscle

As mentioned above, one or more of these structures may need to be removed in a neck dissection. Removal of one jugular vein usually causes minimal or no problems. There are many other veins in the neck and the blood can flow back through them. There may be some temporary swelling, but this usually decreases after a couple weeks. If a neck dissection is being done on both sides of the neck, the surgeon will try to save at least one jugular vein. Both veins can be removed at the same time, but the consequences of the swelling can be quite severe...
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Postby se1956 » Fri Sep 24, 2010 12:28 am

@scorpion

Mayoclinic and Clevland clinic seem to be not accurate too:

Let's see if sometimes (not always) the vascular self repairing doesn't work:

http://phleb.rsmjournals.com/content/vo ... 04303.jpeg

http://www.os.co.za/jpg/mphleb06.jpg

http://t0.gstatic.com/images?q=tbn:rPm8 ... er_lrg.jpg

R.

PS: MS and some venous diseases have roughly the same SLOW time scale.
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Postby malden » Fri Sep 24, 2010 1:05 am

Johnson wrote:No, it means that 25% of the people in the study have CCSVI to some degree. Since some of the controls were family members (and thus, more likely to have a predisposition to the condition), some had other neurological disease, CIS, etc., I don't think you can extrapolate to that being 25% of the global population.

Direct-MS wrote:...The results were 13/44 (30%) of family members had CCSVI and 24 of 101 (24%) of non family members had CCSVI. The total for all healthy controls was 37/145 with CCSVI (25.5%).

If you don't include family, the numbers are pretty the same. 24 people of 101 (not MS, not family) evaluated have CCSVI. Are they going to treat them to save them from reflux, hypoxia, iron deposits, inflamation, active lesions, cronic fatique etc?
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Genes and MS then Your Choice

Postby MarkW » Fri Sep 24, 2010 6:28 am

My input on various misleading comments:

Some people have certain genes (or groups of genes) which predespose them to MS. How these genes lead to MS is not known.
This is solid data not speculation. I do not have the time or inclination to share with the chat room my study (over 7 years) on MS.

Restricted major veins are found in most people with MS if selective venography is used. It is then your choice if you have these restricted veins destenosed or not. Treating symptoms has been the way medical and pharmaceutical practice has developed over many decades. Its your choice to treat the symptom of restricted veins or wait for the definitive answer in 5-10 years.

I am not arguing the all pwMS should have destenosis, just that we must have the right to choose to spend our money on treating our bodies if we want to.

If you will only destenose your veins if it is gauranteed to work, then don't do it. Its your body, your choice.

Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: Genes and MS then Your Choice

Postby malden » Fri Sep 24, 2010 6:50 am

MarkW wrote:...Restricted major veins are found in most people with MS if selective venography is used...


There is no evidence that restricted major veins can't be found in most people without MS if selective venography is used on them too.
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Postby CCSVIhusband » Fri Sep 24, 2010 7:34 am

Why does everyone still argue with these people ... CCSVI is real.

If they don't want treatment, fine. Let them not get treatment and suffer while others get it first.

Someday they're going to want it and wish they'd done it way back when when they first heard of CCSVI.

How do I know? Because I see (in person with my own two eyes) the results of getting CCSVI treated and how it relieves a lot of problems attributed to MS ... EVERYDAY I see it.
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Postby Lyon » Fri Sep 24, 2010 7:52 am

CCSVIhusband wrote:Why does everyone still argue with these people ...
Good point! Let "these people" have their say without arguing because, especially in this situation, malden has made one of the most important points regarding why the vast majority of organized medicine remains skeptical of the validity of the theory of CCSVI....ie...one of the first proofs necessary for even minor interest in a theory is showing a difference between diseased and normal systems.

In the case of the theory of CCSVI that remains to be done and that's the reason for the foot dragging to spend the time, effort and money on clinical trials.

Not that I agree or disagree but some people "wonder why spend the money on clinical trials before CCSVI has been proven to be more common in people with MS than the general public?"
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Postby CCSVIhusband » Fri Sep 24, 2010 8:27 am

It has been proven.

See Buffalo's (blinded study) results where it was greater than 2 people with MS that had CCSVI to 1 without MS that may have CCSVI.

Thank you. You can agree with me now and edit your comment to reflect that proven fact.
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Malden and Lyon Mislead

Postby MarkW » Fri Sep 24, 2010 9:35 am

For the person hoping to make a rational choice over de-stenosis I repeat my point:
Restricted major veins are found in most people with MS if selective venography is used.
The question for pwMS is:
If I choose de-stenosis will it help my MS, if I treat this symptom ?

Malden and Lyon try to mislead by asking if the same symptoms are found in the general population. So what. This is not relevant to pwMS, who have restricted major veins.

PwMS simply need to choose if they are willing to take the risk of adopting an early symptomatic treatment which has been tried by over 1000 pwMS.

If like Malden and Lyon you need more evidence then wait for the 5-10 years this will take to produce. You have the freedom to choose, no action.

I am not trying to counter Malden and Lyon who want more evidence. I simply hope that more pwMS will choose de-stenosis.

Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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