cheer : low number of CCSVI diagnoses..... !!??

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

Re: Can MS be "proven"?

Postby Zeureka » Fri Jan 29, 2010 4:32 am

fiddler wrote:Is there such a thing as "proven" MS? It seems to me that diagnoses of MS are usually made on the preponderance of evidence, not on the basis of any unequivocal test. Given what I have heard before and seen here from many postings, there may be a fair % of people diagnosed with MS who may, in fact, have another de-myelinizing disease, and perhaps other times when de-myelization is not the first or major way that what is defined as "MS" presents itself.

Yes, Ted. I think there are some international established MS diagnosis criteria: usually it's the lumbar puncture (colloquially known as a spinal tap) with MRI of brain and spinal cord that is used as "proof" for MS.

With lumbar puncture you can see certain oligoclonal bands of immunoglobulins, which are - it is said - only present in MSers. The proof via this exam, together with MRI and other, is at least required in Belgium to get prescription for the expensive MS drugs.
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Lumbar Puncture

Postby fiddler » Fri Jan 29, 2010 5:07 am

Hi Zeureka,

I've had the lumbar puncture myself, and that is what convinced my neuro that I "definitely" had MS. In fact, my own LP was only done after more than a year of tests for other diseases, and after I had the LP I had the impression that the diagnoses was "almost definitely MS" and not "unequivocally MS". It would be good to know how definitive that really is in terms of blind trials - anyone have a link to that kind of evidence?

But, more importantly, a lot of people I know who have been diagnosed with MS have never had a lumbar puncture. That means that many people have been diagnosed with MS on the basis of preponderance of evidence (demonstrated symptoms, progressive lesions shown on MRIs, in particular) and the process of elimination. Therefore, if we are testing people reporting results on the basis of "proven" MS and "proven" non-MSers in trials, this could be problematic.

Dx SPMS in 2004.  Liberated 29/04/2010.
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Postby jimmylegs » Fri Jan 29, 2010 5:12 am

fiddler you are right. the usual markers do not constitute "proof" per se.. there is no definitive test for MS (yet).. only increasing likelihood with the more checkmarks a patient has on the "diagnostic" checklist..

with CCSVI we seem to have gained a new indicator, replication is coming down the pipe.. going back to an older indicator, i am not certain exactly what percent of ms patients have oligoclonal bands, but say it is 80% or so, whereas with CCSVI we are starting to see results that are higher (provided testing is done properly and nothing comes up in the future, to somehow debunk the work on CCSVI to date)
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Postby Mechanicallyinclined » Fri Jan 29, 2010 7:25 am

Who knows? In that 5 or 10% category we could have a false diagnosis of MS? There are so many things that mimick MS symptoms.


Maybe some fine tuning in the testing procedures will allow some more hidden problems to be found? There are alot of variables here! Just cuz you can't find the problem doesn't mean it doesn't exist!
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Re: here's what False Creek offers, any comments or suggesti

Postby Sotiris » Fri Jan 29, 2010 8:14 am

cheerleader wrote:Thanks for printing this procedure- it explains alot. First of all, an MRA is a magnetic resonance angiogram of the ARTERIES. Dr. Haacke's protocol specifies MRV- magnetic resonance venography to follow the specific flow of blood in the VEINS from the brain back to the heart. MRA is not the same thing.
Have them call Dr. Haacke, he can help them. Honestly, this is wrong, wrong, wrong....please, someone clear this up!!

Since MRV is a subset of MRAs (i.e. an MRA of the veins) there is a possibility that False Creek protocol is not wrong.
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