World MS Day - May 26 - Promote CCSVI Awareness

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

World MS Day - May 26 - Promote CCSVI Awareness

Postby Liberateus » Wed May 26, 2010 1:15 am

May 26 - World MS Day
CCSVI is proving, more and more each day, to be a significant part of MS - and this fact should be acknowledged today.


Unfortunately, the MSS will probably not include CCSVI information in any of their World MS Day postings. So let's all continue raising awareness today and everyday about CCSVI.

Sadly, there still are many MS patients who don’t know anything about CCSVI, and there are others who don’t have correct information about CCSVI, angioplasty, etc.


Let's keep writing letters to MPs, MPPs, the Health Minister, all the powers-that-be, media, etc. We must continue to keep CCSVI on the table until CCSVI testing and treatment are made available to us - in our own countries.

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QUESTION FROM FELLOW MSer:

Postby Liberateus » Wed May 26, 2010 3:34 pm

QUESTION FROM A FELLOW MSer:

Of all the research studies that have been completed so far, does anyone know how long each of all them took to be completed? I am just trying to calculate how long it will be for the results to come out from the MSSC grant research they are starting in June. It was about a month or two wasn't it?

If 500 people are scanned and again 60 - 90% of the people with MS have stenosed veins and 0 - 30% of controls have stenosed veins this statistically significant difference proves a strong statistical correlation between MS and CCSVI so it would be logical that all MSers be scanned immediately and those with CCSVI be treated for their CCSVI.

Gloriously revealing the precise, exact chemical, physiological, biological, genetic, etc relationship between CCSVI and MS is a great project left over for the researchers after the many lives of MSers have been improved and saved. Is this not right? Who agrees with this?
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Postby BooBear » Thu May 27, 2010 4:09 am

Lib, I totally agree.

When I first learned about CCSVI, I was very intrigued. As I researched and learned more, I became excited. When I found it nearly impossible to get a treatment done, I became frustrated. When I read (and heard directly) misrepresentations about CCSVI from the community that is supposed to help us, I became angry. Now, I am simply determined.

For me, it's simple. If I have blockages in my veins that prevent proper blood flow to a major organ, I want it fixed. Period.

I am trying to get into the vascular department of a major medical institution here in the States while I wait for one of my other avenues to open up. I had a long talk with them and never mentioned MS. I said I had neuorlogical symptoms and a history of vascular disorders in my family (which is true; my father has had several blood clots and strokes). You know what they said? "We can do a MRV and take a look at your veins for possible stenosis."

My husband asked if I was trying to sneak in under the radar. I told him that the medical community can't have it both ways- if you are going to say that MS is autoimmune, period, then my vascular issues should be of no concern. Fix them!!!!
Three veins angioplastied.  One renewed life.  
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