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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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fiddler
PostPosted: Tue Aug 21, 2012 6:19 pm 
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Interesting... a meta-study soon to come out soon will say that there are no studies that have been appropriately undertaken that can attest to the efficacy or otherwise of CCSVI treatment for MS symptoms.... yet this neurologist KNOWS that this one study (which may or may not have been appropriately done) absolutely PROVES that the treatment is useless: http://www.theglobeandmail.com/life/hea ... le4490423/. What a scientist! And here I am, 27 months into my placebo effect... I think we should wait for some real, valid research before we pass judgement.

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erinc14
PostPosted: Wed Aug 22, 2012 7:38 am 
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i always notice the tone / wording of negative articles odd.
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tiltawhirl
PostPosted: Wed Aug 22, 2012 8:42 am 
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Four months of placebo effect here, and getting stronger.

tilt

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Cece
PostPosted: Wed Aug 22, 2012 9:08 am 
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Quote:
“The debate in the scientific community was brief, swift and is over,” said David Hafler, chairman of the neurology department at the Yale School of Medicine. “The government has squandered precious resources not using peer-review, but instead using emotion and theologic belief and I think shame on the Canadian government for bowing into those pressures.”

geez
let's look for intraluminal abnormalities with tools that can actually see intraluminal abnormalities: ultrasound, intravascular ultrasound, flouroscopy, autopsy
MRI has its value but is imperfect
and the study appears to have again confirmed the association (more CCSVI is present in MS patients than in healthy controls)
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cheerleader
PostPosted: Wed Aug 22, 2012 9:17 am 
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The Globe and Mail has a particular slant, I'd say....

and the study also showed that CCSVI was linked to slowed blood flow through the brain.
Quote:
Thirty-nine patients with MS and 26 healthy controls participated in the study. The patients with MS had tested positive for CCSVI by CDU.
The researchers found that the CCSVI-positive patients did show decreased blood flow and volume compared with the controls.

http://www.diagnosticimaging.com/mri/co ... 19/2098013
That's kind of a big deal....hypoperfusion is not good for brain health.
cheer

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milesap
PostPosted: Fri Aug 24, 2012 4:02 pm 
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Worth a read
http://www.davidwheldon.co.uk/ms-treatment1.html
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cheerleader
PostPosted: Fri Aug 24, 2012 4:18 pm 
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milesap--David's wife Sarah posts on This Is MS as Anecdote---you can find lots of info in the antibiotic thread. Jeff did the NAC test and was negative. http://www.davidwheldon.co.uk/NAC.html
Marie Rhodes did the Wheldon protocol for a while, but didn't help. Certainly a worthwhile avenue for those who restenose or do not benefit from venoplasty.
cheer

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dual stents placed 5/09
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NHE
PostPosted: Sat Aug 25, 2012 12:39 am 
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cheerleader wrote:
milesap--David's wife Sarah posts on This Is MS as Anecdote---you can find lots of info in the antibiotic thread. Jeff did the NAC test and was negative. http://www.davidwheldon.co.uk/NAC.html


How does one distinguish between NAC's normal mucus thinning effect and a positive test for CPN (or is this even an issue)?
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NHE
PostPosted: Mon Aug 27, 2012 1:23 am 
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NHE wrote:
cheerleader wrote:
milesap--David's wife Sarah posts on This Is MS as Anecdote---you can find lots of info in the antibiotic thread. Jeff did the NAC test and was negative. http://www.davidwheldon.co.uk/NAC.html


How does one distinguish between NAC's normal mucus thinning effect and a positive test for CPN (or is this even an issue)?


Another question... Wouldn't other thiol containing antioxidants, such as r-lipoic acid, be expected to have a similar effect on CPN?
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AMcG
PostPosted: Mon Aug 27, 2012 4:52 pm 
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“The debate in the scientific community was brief, swift and is over,”

Sounds like the academic version of premature ejaculation. Properly designed research takes a bit longer. Perhaps someone should tell Hafler to calm down and take it slowly. Strange thing is it is always us they blame for getting over-excited!
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1eye
PostPosted: Tue Aug 28, 2012 6:54 pm 
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Quote:
“The debate in the scientific community was brief, swift and is over,”


What was it, brief or swift? No debate here any more... it's all done. I'm convinced.

Premature academulation. Love it.

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Robnl
PostPosted: Wed Aug 29, 2012 3:17 am 
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http://www.jvir.org/article/S1051-0443% ... 7/abstract
Quote:
Purpose

This study proposed to prospectively evaluate safety and clinical changes in outpatient endovascular treatment in patients with multiple sclerosis (MS) and chronic cerebrospinal venous insufficiency (CCSVI).
Materials and Methods

Two hundred fifty-nine patients with MS were followed with the Multiple Sclerosis Impact Scale (MSIS-29) before and for 1and 6 months after treatment of extracranial internal jugular vein and azygos vein stenoses and occlusions using venous angioplasty, as well as stent placement in 2.5% of patients. Before treatment, the patients were tested with magnetic resonance (MR) venography and flow quantification.
Results

We found statistically significant improvements in the MSIS-29 scores (P < .01) at both 1 and 6 months. At 1 and 6 months, 67.9% and 53.6% were improved on the physical scale, respectively, and 53.0% and 44.4% were improved on the psychological scale, respectively. Women showed greater improvement than did men on the physical scale at 6 months (P = .01). Patients with primary progressive MS (PPMS) showed less improvement than did those with relapsing-remitting MS (RRMS) on the psychological scale at 1 month, and venoplasty treatment of more vein sites versus fewer vein sites showed greater improvement on the physical scale at both 1 and 6 months. Fifteen patients (6.3%) reported recurrent symptoms after clinical improvement and were treated again. There was one serious adverse event, a deep venous thrombosis at the catheter insertion site, which resolved with treatment.

Conclusions

Endovascular treatment of CCSVI in patients with MS appears to be a safe procedure resulting in significant clinical improvement.

:mrgreen: :mrgreen:
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Anecdote
PostPosted: Sat Sep 01, 2012 8:02 am 
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NHE asked:
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Quote:
milesap--David's wife Sarah posts on This Is MS as Anecdote---you can find lots of info in the antibiotic thread. Jeff did the NAC test and was negative. http://www.davidwheldon.co.uk/NAC.html




How does one distinguish between NAC's normal mucus thinning effect and a positive test for CPN (or is this even an issue)?


I don't think that one can say that the NAC test is a positive test for C pn but simply that it is a lot more accurate than many lab tests. For instance, it is reliant on having elementary bodies which react by having their di-sulphide bonds broken. If at the particular time one only has reticular or cryptic bodies, this won't happen. Now, some people seem not to respond but the react very strongly to antibiotics: this is probbly because the reaction to NAC was only very subtle because of the lack of elementary bodies.

Of course, if someone has very bad congestion in their lungs, MAC is often used for thinning the mucus, but I guess most people know if they have this or not.

Also, hay fever sufferers like me are probably better off not trying it in the hay fever season!

As far as I know, other thiol containing antioxidants don't work this way: I don't know why.

Sarah

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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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