Any one with MS and CCSVI?
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So far The VA has been great. I have secondary progressive MS, and I don't believe the old theory that doctors are God. This time, the Neuro's might be dead wrong on the CCSVI question. There is a lot of information on the internet, yes, including facebook. But there is also ccsvi.org which is the aliance for CCSVI. There is thisisms.com a world forum on MS that has a very good section on CCSVI. There is ccsvi-ms.ning.com the CCSVI Locator, another good impartial web site on CCSVI. I am going to San Diego some time in October to be screened. I have taken the DMD's, including Avonex, and even a two year treatment of mitoxantrone.
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No...I don't think it needs to be moved to another forum. There are a lot of Veterans with MS who just might like to know that CCSVI is another option. I have had MS since 1971, and this is the first thing that sounds like it might have promise. I refuse to let it get buried, that's what the heck this is about. I intend to ask the Doc at my next appointment at the VA. I think it is an issue for Vets too, or do we not deserve answers because it's the VA Sorry, I do not mean to offend, but i think it's reasonable.
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