decade of research on vascular diseases

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

decade of research on vascular diseases

Postby sbr487 » Mon Dec 14, 2009 7:21 am

Not a question but just a thought ...

Lot of us worry the fact that CCSVI might be blocked by obvious entities for obvious reasons. But I really think that after initial hiccups, more research will pick up not only for MS but if abnormal blood flow can be causing other diseases also. At least the researchers will take this path since the initial work has already been done and reward might come within 4-5 years of research. So I think if CCSVI comes out with flying colors, there is no stopping the researchers ...
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Postby LR1234 » Mon Dec 14, 2009 7:24 am

I think you are right that the vascular system will be investigated for other conditions and that more research into the Vascular system will happen for MS.

The only thing is that MS dr's are traditionally neurologists and not vascular specialists so they do not have the expertise to take this further, they will have to give up some sort of "ownership" of the disease to another department.
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Postby thisisalex » Mon Dec 14, 2009 1:03 pm

and vica versa... i went to a top level vascular surgeon and he said its very interesting, but he does not know anything about MS. he cant decide wheter its true or not. he said he must be convinced by an MS neurologist in order to step forward... but the neurologist wont understand a word about the venous system...
there should be a mix of these areas somehow...

LR1234 wrote:The only thing is that MS dr's are traditionally neurologists and not vascular specialists so they do not have the expertise to take this further, they will have to give up some sort of "ownership" of the disease to another department.
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Postby bestadmom » Mon Dec 14, 2009 1:39 pm

University researcher interventional radiologists will take heed.

Venous stenosis is nothing new. Iron deposition in the brain causing neurodegenerative problems isn't new. Do they need to be convinced that you have MS? Not necessarily.

If you can get them to do diagnostics, you're halfway there. Once they see the stenosis and read the research, they'll be hooked. If they aren't, find someone else who has the drive and ego to investigate further and make their mark.

Don't waste your time with the neurologists. This is out of their realm right now and they will be the last to buy into this.
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Postby Arcee » Mon Dec 14, 2009 1:54 pm

And also, all the ways this is presenting - - missing jugular, corkscrew jugular, double valve, etc. - - is like venous candy to these folks. The curious professionals will want to know more. We've gotten some promising responses to our North Eastt outreach efforts. And now it sounds like Duke as well. Very exciting.
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby jay123 » Mon Dec 14, 2009 2:43 pm

And just remember the old fall back, this vein is broken and I want it fixed! Yes, doc I have MS but this problem is slowing blood draining from my brain. Oh by the way, I think it will help my MS!
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Postby thisisalex » Mon Dec 14, 2009 3:25 pm

jay123 wrote:And just remember the old fall back, this vein is broken and I want it fixed! Yes, doc I have MS but this problem is slowing blood draining from my brain. Oh by the way, I think it will help my MS!


:) its not that easy. another surgeon told me he used to close veins during complex operations, sometimes it is easier to do than reconnect them again... and he told me its not a problem, because veins not so important, and there are many more smaller ones (collateral veins) which are going to drain the brain... (huh... maybe 5 years later its going to become MS... )
lets convince a doctor like that, that your jugular vein has a little turbulence in it, and it needs to be opened :)

BUT if a neuro is going to say: OK this is the cause of MS, then it will be all right. Our situation would be better if neuros support this research.

i give it a try, a surgeon promised me to debate this theory with a big neuro name... i will report on this :)
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Postby frodo » Mon Dec 14, 2009 3:42 pm

jay123 wrote:And just remember the old fall back, this vein is broken and I want it fixed! Yes, doc I have MS but this problem is slowing blood draining from my brain. Oh by the way, I think it will help my MS!

And if they are still reluctant, remember that nobody has MS for sure. There is officialy no diagnosis 100% sure. Therefore you can only be sure about your blocked veins!!!!
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Postby sbr487 » Tue Dec 15, 2009 1:52 am

exactly. The scan should be a basic test in future and should not trace backwards from MS. Today, a routine blood test will indicate possible infection. From there, based on symptoms, it could be narrowing down test for typhoid, tb etc. I really want to see a day when the neck scan is added to routine test (yes, not wait until I have neuro symptoms) ...
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