80% it's true revisited

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

Postby Johnson » Tue May 11, 2010 12:55 am

Hi CostNat,

Here is a link to scotoma on scotoma on Wiki. I am likely to have that too, but mine seems a scintillating scotoma - I get purple grids that flash in my eye (had optic neuritis there). I'm not sure if it is the same thing. If that accounts for EDSS 2, I must be at about 37.4 along with everything else. Neuro said I was 2.5, but I figure 1.5. What the hell do they know, anyhow? Mine doesn't even listen. Physically, you sound a lot like me.

Damn, I hope you improve.
My name is not really Johnson. MSed up since 1993
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Postby costumenastional » Tue May 11, 2010 1:14 am

Thanks man. You shouldnt bother to look it up. No medical definitions will explain whats wrong with my eye better than myself you know? My optic nerve is seriously damaged and that's it.
I really hope i ll improve too. i am only 35 dxed 33 and if nothing good happens it gonna be an unfair fight. But i shouldnt behave like a baby. i ll give it some serious time and hopefuly i ll have something to share.

For now, i am happy i have had angio in my veins and i am able to wait for improvements. The way i see it, this is the way to go since there is nothing else out there for us. And Zamboni 's methods will be perfected in a couple of years time.

My whole brain is suffocating and there is no way in hell that this is happening because MS is sending my immune system ALL OVER IT. My bran is dying for some other reason.
I saw. I saw that every single one of us has vein problems. The more serious, the more serious MS is. So, every one should get this fixed as soon as possible.
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Postby mshusband » Tue May 11, 2010 4:00 am

Costume ... and everyone else.

I think it's safe to say if you had something for years (unabated) like you say about your "wrist thing" ... and it goes away after liberation ... then MOST LIKELY liberation is why it went away.

It's going to take some time like you said - 7 years of build up aren't going away over night ... but the body is an amazing thing that heals itself. That's what it does. It can heal some MS too ... maybe not everything ... but over enough time it will heal enough of it.
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Postby Billmeik » Tue May 11, 2010 4:56 am

I would argue that very little remission goes on where lesions heal and lots of reorganization where the braind figures out how to do a task in a new area. So people in wheelchairs suddenly walk, numb fingers are suddenly normal, but it's more like relearning than healing

Having slept on this thread I still find it odd that dr ziv told a lady reporter in canada the 80% number and zamboni too. I think the subgroup of ms patients will come out and maybe be significant.
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Postby Billmeik » Tue May 11, 2010 4:56 am

I would argue that very little remission goes on where lesions heal and lots of reorganization where the braind figures out how to do a task in a new area. So people in wheelchairs suddenly walk, numb fingers are suddenly normal, but it's more like relearning than healing

Having slept on this thread I still find it odd that dr ziv told a lady reporter in canada the 80% number and zamboni too. I think the subgroup of ms patients will come out and maybe be significant.
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Postby costumenastional » Tue May 11, 2010 11:41 pm

mshusband wrote:Costume ... and everyone else.

I think it's safe to say if you had something for years (unabated) like you say about your "wrist thing" ... and it goes away after liberation ... then MOST LIKELY liberation is why it went away.

It's going to take some time like you said - 7 years of build up aren't going away over night ... but the body is an amazing thing that heals itself. That's what it does. It can heal some MS too ... maybe not everything ... but over enough time it will heal enough of it.


It 's all these "instant improvement" reports that make me sceptical about myself. There was no such impact for me. So time will tell.
About my wrists: well, it was there only the 3 last weeks before my operation. I know it was, like we all know what we feel. This symptom is not so bad anymore. Yes, if this improvement last i can attribute it to the treatment. Maybe its like they say:what came last will go first, it s kind of natural.
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