Come on guys

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

Come on guys

Postby scorpion » Mon Aug 23, 2010 1:35 pm

Please be careful with jumping on other forums, especially the general forum,where new people come and look for answers, and making claims that have not been substantiated. At least state it as your opinion and not as fact. To express something to someone new to the board like "So I shouldn't get yourself worried. Besides, it looks as though the new CCSVI treatment would clear up smaller problems like these completely even if the worst did come to it."Come on, no one is sure if this statement is true or not. I bet Zamboni himself would not even feel comfortable telling someone that. To share your hope about CCSVI is one thing but to make a statement like that is wrong and misleading,
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Postby selkie » Mon Aug 23, 2010 3:08 pm

Yes, we're still learning about CCSVI and so much yet to be learned. I think it's wonderful to finally have hope, but we have a long road to travel before we'll have any absolutes, if we ever will. MS is such a puzzle, and so many variables exist as each case of MS is different.

It's good to have hope - I am guilty myself of having hope that CCSVI will be my answer, as I've stopped DMDs (though have started and will continue LDN unless I have bad side effects which I haven't yet, lol). But I know in my heart that we don't have all the answers or the whole picture.

I tend to stay away from advising newbies, especially newly diagnosed people unless I have a very concrete example from my own experience or the research.

The best thing I think we can tell newly diagnosed people is to read, read, read, and learn to be their own advocates. We all have to ultimately make our own decisions about what treatment path to choose. At this point, it's far from being clear cut.
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