CCSVI and pre-existing damage

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

CCSVI and pre-existing damage

Postby Toosje » Fri Nov 27, 2009 11:15 am

I see everyone is all excited about this CCSVI and you all should be I on the other hand have some reservations about it being a "cure." I have been living with MS for 27 years and yes I am still high functioning but I still have questions: For those of us that have had MS for an extended period of time and know there is pre-existing damage to our nerves already, how are they going to fix that part of the disease that has already done so much damage. Will this procedure re-grow the myline sheath coating that is already lost? I am not saying that I am willing to have this procedure because I am but I just have a lot of questions that still need answering.
:?:
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Postby ozarkcanoer » Fri Nov 27, 2009 11:20 am

Toosje... It is not at all clear that this is a "cure". It's too early. Maybe The Liberation Treatment will just slow down progression. Dr Salvi, speaking on the W5 documentary, said the word cure... but that he had to be careful. Maybe when reflux has stopped, then the brain can heal itself. We just don't know. It will probably take a long time and a lot of research to figure this out.
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Postby Toosje » Fri Nov 27, 2009 11:47 am

Well yes that is true but I have been on medication that has slowed down the progression considerably in my opinion and that of my entire family. If there is still more research to do in this area why are they collaborating to find the facts faster. I am by no means a medical expert in this area but I have always been told that two heads are better than one. I am not understanding why if they are researching for the same answer why they cannot just share information they may find it faster and yes the credit would be shared, but really do we care?
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Postby Habenoughyet » Fri Nov 27, 2009 11:52 am

And that's exactly where the neuro/pharma companies come into the picture. Instead of focusing on this being an auto-immune disease, trying to cure it, or slow it down with interferon's, etc. They should focus more on restoring damaged nerves, myelin replenishing, etc...

There will still be plenty of $$$ to be made of off our backs.

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Postby ozarkcanoer » Fri Nov 27, 2009 12:21 pm

Collaboration is difficult for scientists. For one thing, they know their own specialties very well. For another, there is competition among scientists to be the "first". And another reason is the prevailing idea about a disease. If the prevailing idea is that MS is an autoimmune disorder, then neurologists and not vascular specialists research MS. Up until now, up until Zamboni, only a few people were interested in the possible venous involvement in MS, and the venous idea has gained little purchase. This idea must be pursued by our MS societies, because they are our advocates. I hope that now the people at the NIH will get involved also. There is a lot of inertia in the scientific world. Let's just keep on pushing this idea and let the scientific community know the facts.
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