This Is MS Multiple Sclerosis Community: Knowledge & Support

Just another biased study done by evil neuros...oh, wait.

From Ashton Embry commenting (August 11, 2011) on Hafler's involvement with an MS genetics study

"It is not surprising that Compston and Hafler are fighting CCSVI because they both have huge financial ties to the MS pharmaceutical industry and are "big names" in the MS research world.

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It isn't surprising that Hafler would be behind this study. Life time reputations and a lot of money get involved with the different theories behind the cause of MS. The established world of MS medicine has a habit of circling the wagons when they are threatened. It's no different with their take on CCSVI. While CCSVI still needs a lot of reasearch to see if it's viable or not, the opponents waste no time in going to the attack.

A recent study by a neuro at the University of British Columbia studied thousands of patients over several years to see the effect of the DMDs on MS disease progression. It found no difference over those who took no drugs during the same time period. You can imagine how that study was viewed by our esteemed neuros.

Nothing much has changed for many years in our several different views on what causes MS and how to treat it. The only certain fact is nobody has been able to prove what causes the disease or what kind of disease MS actually is. And big pharma has made billions of dollars in the meantime trying to treat MS patients with their vast array of different drugs.

Harry

The Globe and Mail characterized this study in a particular manner.

But there is a link in this study. CCSVI is linked to reduced cerebral blood flow and volume.


http://www.diagnosticimaging.com/mri/co ... 19/2098013
They did not look at gray matter involvement in this reduced perfusion, they only looked for correlations in white matter and did not find anything specific.

If people are OK with having reduced cerebral blood flow, or hypoperfusion, that is certainly their perogative. My husband wanted his venous malformations repaired, so that his bloodflow is no longer reduced. And he has had a reversal of gray matter atrophy. His gray matter looks normal. Three and a half years later, no MS progression, no more heat intolerence, spasms, reduced fatigue. He works full days and mountain bikes.
Let the research continue-
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

You have forget the following of the sentence.

opening veins, focusing minds.

Trials and studies have been focused on MS patients' white matter for many years. The number of lesions that appear in the white matter have been the benchmark for these trials yet there is little if any correlation between lesions and MS symptoms and/or disease progression.

Recently there has been focus on the grey matter where some researchers feel the real secret to MS hides. Fix the problem in the grey matter and possibly fix the MS. Yet the trials and studies continue to be about the white matter and the docs, trying to attack other docs work, continue to center on this area. Wonder why?

Exactly, Harry.
That's why my husband can have over 20 white matter lesions and still mountain bike, while our friend has one lesion and is bedbound. My husband has no gray matter atrophy. White matter lesions are still used in studies because that's what EAE in mice models. But it's the wrong model---the meds cure mice of EAE, but do not stop MS progression in humans.
For those who are interested in learning how slowed perfusion is related to CCSVI, (as the Italian study found), here is another blinded study showing-

Hypoperfusion of brain parenchyma is associated with the severity of chronic cerebrospinal venous insufficiency in patients with multiple sclerosis: a cross-sectional preliminary report
http://www.biomedcentral.com/1741-7015/9/22/

cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

My evil neurologist told me that lesions in the brain have little correlation with symtoms because many regions in the brain do the same functions. But having lesions in the spinal cord is different, because the spine is narrowed route.
I used to have 12 lesions in the brain and no difficulty walking, until I got 1 more in the lower part of the spine.
She has seen hundred of patients with MS and I guess she knows what she's talking about.

On the other hand, when I see Zamboni claiming that vitamine D has a strong association with the vascular system but not many with the immune system, I really see an ignorant, or a focused mind.
http://www.youtube.com/watch?v=WJelF8gdjpU

So my spinal (white) lesions don't matter? What a relief!

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RRMS dx 3/3/11; Copaxone since 12/1/11

I didn't say that, did I? What several researchers have said is white matter lesions don't correlate with MS disease symptoms nor progression and are not a good indicator as to what is happening with the disease. What is happening in the grey matter appears to be far more important and needs to be studied in more detail.

Drug trials have hung their hat for years on white matter lesion activity and we all know how effective these drugs have been over the years, don't we?

The Italian researchers in the linked CCSVI study were looking at white matter lesions in the brain and trying to find correlates to CCSVI. I assume they did this because this is what is used in current DMD clinical trials. They do not typically measure spinal lesions in DMD clinical trials, instead, focusing on the brain. That method wasn't decided by Dr. Zamboni. That was put in place by Dr. Thomas Rivers in the 1940s when he first modeled EAE (or ADEM) in rabbits and mice, and has continued on since that time. Spinal lesions are real problems, and I feel for you, Mark and cervo. Jeff has one lesion on his cervical spine and it still causes him neuropathic pain. I simply wish more answers for everyone...and believe the research into perfusion deserves more time and money. CCSVI Alliance is now looking into how cerebrospinal fluid issues can compound problems in the spine. It upsets me when researchers see a link between slowed cerebral bloodflow and CCSVI, yet claim it doesn't matter. I hope you understand that the PTB do not want further exploration into the vascular connection.

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS