Here's an interesting kettle of fish.

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

Here's an interesting kettle of fish.

Postby David1949 » Sun Jul 10, 2011 7:23 pm

"MS drug trial 'a fiasco' – and NHS paid for it"
Source: <shortened url>

The study was done to determine if the MS drugs delay the progression of the disease. Here are some interesting findings:

1) “It showed that the drugs failed to delay the onset of disability in patients – defined as walking with a stick or using a wheelchair – and may even have hastened it.”

2) "MS: why the drugs don't work
Multiple sclerosis is a chronic disease. It may take 40 years to run its course. In developing drugs to slow its progression, doctors have used brain scans to show lesions which the drugs appeared to prevent, and gave quicker results. Some experts thought the lesions were the disease but little effort was made to check. But preventing lesion formation does not prevent disability caused by the condition. The drugs deal with the lesions, not the disease."

3) "Alastair Compston, professor of neurology at the University of Cambridge, defended the scheme. He said that despite a disappointing outcome, the scheme had "advanced the situation for people with multiple sclerosis" by improving understanding and care of the disease."
How so??

The first finding shows that in terms of slowing progression the drugs are NWAD (Not worth a damn)

The second point apparently shows that the lesions are not the disease. “… preventing lesion formation does not prevent disability caused by the condition.” Hmmm that one deserves some thought.

The third point is that this crap is what the “experts” want us to believe is superior to CCSVI treatment.
It may be that the drugs reduce the number of relapses, but for those of us who don’t have relapses what use are they?.
Last edited by David1949 on Sun Jul 10, 2011 10:33 pm, edited 1 time in total.
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Postby David1949 » Sun Jul 10, 2011 7:46 pm

Well I must admit there is one interesting finding from this study;
"the lesions are not the disease".

Of course I'm not a doctor so I can only speculate about what that means, but the first thing that comes to mind is that something else is doing the damage. The lesions are only the body's normal response to injury. What do you think?
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Postby Cece » Sun Jul 10, 2011 7:59 pm

NAWM. Normal appearing white matter but with damaged axons within it. This is not measured by lesions or relapses. I don't know how easily NAWM can be measured? But it may result more directly from hypoxia or the bad effects of cerebral hypoperfusion.
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Postby Johnson » Mon Jul 11, 2011 1:33 am

David1949 wrote:Well I must admit there is one interesting finding from this study;
"the lesions are not the disease".

...but the first thing that comes to mind is that something else is doing the damage. The lesions are only the body's normal response to injury. What do you think?


My last MRI (2010) revealed no lesions, yet I had some of my worst issues in years. I have never taken any prescribed drugs.

I think lesion counting just fills the boring hours of fruitless endeavour. Lesions are simply scars, or "scabs", and like any scar, fade away in time (at least mine do). Could be a spirochete drilling in for a low pressure lunch, the rupture of a fragile venoule... The lesions are venocentric.

That is the $2 million question. I'm still broke.
My name is not really Johnson. MSed up since 1993
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Postby Thekla » Mon Jul 11, 2011 3:23 am

There are cases of asymptomatic people being diagnosed postmortem with ms due to the presence of extensive lesions. This always puzzled me.
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Postby MegansMom » Mon Jul 11, 2011 4:05 am

The venocentric lesions appearance do NOT correlate with "attacks" nor do the locations of these lesions correlate with "function" areas ( like neurosurgeons use when determining risk) this has baffled the neuro community for many years.

Could the lesions surrounding the vein be the bodies way of "sandbagging" the vessel wall to reinforce the breeched BBBendothelial wall at points where the reflux has deposited iron?

Seems to me that there is much more recent evidence that global gray and white matter has evidence of damage and inflammation and death with subsequent.atrophy over time. Seems that this could be by the prolonged starvation (hypo perfusion) of the tissues secondary to CCSVI or other cause of chronic lower than normal brain fuels ( glucose and oxygen).

fMRI BOLD, PET scans and 7 tesla MRIs seem to support this data. These are newer tests and able to see more accurately vascular structures and oxygen and glucose - see Dr Haakes lectures for more detail-

Looking at lesions as evidence of disease progression seems like an outdated way that Neurologists measured MS progress ( it was all they knew) , we should encourage more focus on patient assesssment both physical and mental to assess the disease going forward.
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My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Postby 1eye » Mon Jul 11, 2011 9:32 am

Why don't they count black holes/axon damage? I have zillions of these, easily visible on my MRIs. Maybe it's because they don't expect them until later, when you are already disabled and unable anymore to earn the money it would take to pay for any expensive drugs, which is really what is wanted the most. To get your money while you still have any.

Past a certain point you are nothing but a burden to the system.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Loobie » Mon Jul 11, 2011 10:12 am

Every MRI I've ever had has come back "unremarkable" meaning I don't pop off lesions. Tell that to my EDSS score. Granted I've had the procedure and it had some positive effect on me but not nearly the claims of some others (I'm still jealous of you guys!). However, I've been off the drugs for a while now and besides the obvious MS symptoms I feel much, much better not taking any of that shite in an overall health sort of way. Blind faith is what made me try in the first place but prescribing a drug that "we think it works this way" and "we're not exactly sure the mechanism of action" doesn't cut it. Also how can you fashion a drug for something you don't know the cause of or even have a target for the drug to work on? Answer is you can't. They chose a primary endpoint of less lesion load over a short period of time vs. people not on drugs. And the numbers still were not that good. So once they met the goal of their stated endpoint, it didn't matter if it helped or not, just that it met the endpoint for approval.

Wait for a trial where the endpoint is actual lessening of actual progression or even improvement and I'll pay attention then.
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Postby pklittle » Wed Jul 13, 2011 6:13 pm

It depends what you're having an MRI of, as to whether there are lesions showing or not. I've had MRI's of not only the brain but the spine too, where lesions were seen.

MS is the devil. :evil:
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Postby munchkin » Thu Jul 14, 2011 5:46 am

My last MRI showed no real change from the one at initial diagnosis - 6 years apart - my neuro couldn't tell me why I was getting worse. So, I don't' know if the MRI or lesions is really a good measure for anything MS.

Then again, I'm not sure that anything to do with the neurological diagnosis or treatment of multiple sclerosis is appropriate anymore.

In my experience with the Canadian system they will only do the bare minimum of tests to make a diagnosis. MRI of the spine was considered excessive if the brain MRI was conclusive.
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Postby mavis » Thu Jul 14, 2011 2:58 pm

My neurologist always says the picture (MRI) and the patient can be completely different (and I believe in many cases they are), that's why they treat the patient. And that's why he never ordered another MRI for me. I also believe a big reason is the Canadian healthcare system. I find that with the old(er) doctors it's more of an issue. Somehow they are more careful(!) with ordering expensive tests.

I was told my initial MRI was somewhat "benign". My, how things have changed since then.
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