my honest and realistic point of view

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

Postby 1eye » Wed Aug 18, 2010 3:12 pm

Just as a btw, I can't say I am pro-CCSVI or anti-CCSVI. There I go getting all non-linear about terminology again, but CCSVI is the disease, or condition. What idle minds need to know, is if you are pro- or anti- Liberation. Or "Blogger's Lib" as I like to call it. I am definitely a Libran. My mother was a writer, under the pen name of her sign, Libra. We don't burn no underwear or library cards. But watch out. Don't tread on me. We bite.

Seriously, I'd have to think twice if my Libbing was costing me $20K a time. And I know MS exists. I just think of scleroses as symptoms. There are plenty more where they came from. I gotta million of em. Lots of medicines out there for the symptoms. Hardly any for the disease.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Lyon » Wed Aug 18, 2010 3:37 pm

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Last edited by Lyon on Sun Nov 20, 2011 6:41 pm, edited 1 time in total.
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Postby foreignlesion » Wed Aug 18, 2010 3:58 pm

1eye,

Your post shows my point exactly of how people are perpetuating the idea that MS is a symptom that can be treated by liberation. I think it is far too early to make that assumption and there is nowhere near enough evidence to support it. In fact, if anything, there is evidence to show that this is in fact NOT true (note Buffalo study). We will not get far in the fight for treatment using this aproach or reasoning.

Treating CCSVI as a condition in and of itself, seperate from MS, as was done recently by the Italian gov't, is a stance that will garner much more support and doesn't convey the same air of "false hope". It would be great if they could show this to be true but at this time it is a theory that doesn't hold much water and is too easily refuted.
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Postby 1eye » Wed Aug 18, 2010 5:50 pm

I've always considered it a cop-out to deny connection with the 'basket of symptoms' called 'MS'. Sure, CCSVI is a condition in and of itself. I think I said scleroses were symptoms.

OK, you win, I'm easy, it is not fair to infer there are any treatments for 'MS'. Or in fact for the cause of lesions of CCSVI. So what? There is a treatment for the outflow insufficiency which is also a symptom of CCSVI.

I will not deny the truth just to be, and I didn't invent the term "medically correct." Bottom line is CCSVI will kill you, given half a chance, and the only way we have of preventing that is Liberation. Dr. Sclafani is not going to treat 'MS'. He will be treating CCSVI.

Some of 'MS' may not respond to Liberation. Some claim it has taken all their symptoms away (from Ferrara to Stanford). I don't know which if any of my symptoms will be affected. But this is not a headcold we are dealing with. It is a congenital vascular malformation and it is responsible for some, if not all, of the symptoms I have always thought of as 'MS'. I don't know about you, but when I watched that November CTV special, in my mind, it was the beginning of the end for 'MS'.

I don't know what is 'MS' or what causes 'MS' or what fixes 'MS', and I care less as I go. This may conflict with the sayings of Dr. Zamboni, or other doctors. I would be worried about going off my 'MS' medication, if there were any that were available to treat it, since I was 'SPMS'. Like many of my doctors, I have given up on modifying the 'disease' 'MS', in my current state. But Liberation may help some of the symptoms that I used to think of as caused by 'MS' whatever that is.

When I worked in electronics, I found out you don't get anywhere until you successfully define what the problem is. After that, it's an engineering problem. Same with CCSVI. What good does it do a 56-year-old to know CCSVI is congenital? It may help my children. Hope not.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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