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

Postby mrhodes40 » Sat Jul 25, 2009 5:57 pm

I hope I stay friendly, I always mean to for sure :D

As for the 850 number
study 1 doppler only=89msers 60 matched controls
study 2 doppler only=109 msers 177 controls including vascular disease and cardiac disease
study 3 65msers and 235 controls--venograms were done here on MSers
study 4 Liberation 100
totals are 363 ms patients and 472 controls=835 people in the blinded work with the MSers identified with 100% accuracy using only their dopplers by blinded researchers.

You can't fake that. And if you tried, you'd find out soon enough because the venograms would show your error. And as soon as other docs looked at people they'd see no stenosis doubly showing your mistake. But it is not going that way

These studies were BLINDED on both sides; the sonographer doing the doppler did not know what the diagnosis was, and the doctor reading the data later did not know the diagnosis either.

we need more replication, but so far, things look good
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby cheerleader » Sat Jul 25, 2009 6:07 pm

Thanks for the numbers, Marie - that helps...

Wow...what a catch 22 has been set up on this thread!
If Zamboni found stenosis in 85% of CDMS patients, some would say "See! stenosis can't be causative. It's not in all MS patients!"
If he finds it in 100% of CDMS patients...it's assumed he must be faking the results. Just can't win.

Speaking of winning/losing....we went to a Dodgers game last night...first time in 8 years. Jeff got the tix 'cause he wanted to see a game (!), we took our son and a friend, and we sat right behind the dugout (and Tommy LaSorda-) Had a blast, ate Dodger dogs, did the wave and stayed for the fireworks past midnight. Our team lost, but we had a great time. So many things are changing in our lives, we're doing stuff I never thought we'd do again. Going to a party at friends' tonight.

And it's not even 3 months since Jeff's stent surgery.
so.....back to that paper!
later,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Lyon » Sat Jul 25, 2009 8:56 pm

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Postby Ryder35 » Sun Jul 26, 2009 12:21 am

What if the stenosis is what causes MS like symptopms. There might be different causes for the stenosis but stenosis could be the thing that causes demylinisation (sp) in all deseases that feature it.

No one knows the cause(s) for MS so I wouls say no one really knows what MS is in the first place. Just a group of symptoms caused by demylination.

My wife was DX with MS 7 years ago based on MRI and sympoms, she has just been dx with Lyme (not sure if it is lyme and ms, Lyme misdiagnosed as MS or Lyme induced MS) Bottom line is both deseases can cause the same symptoms as they both cause demylinisation. What if they both cause demylinisation because they both involve stenosis? Lyme can cause blockages in arteries and veins I seem to remember.
Regards<br />John
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Postby Loobie » Sun Jul 26, 2009 4:47 am

All I know is this:

No one really understand the pathogenesis (right word?) of this disease.

Right now I'm getting worse and want it to stop.

The only FDA approved therapies that are all immune system based SUCK.

I've been on two and one trial drug and NONE of it has worked.

This makes sense and I'm going to freaking try it.

If it doesn't work, will I try the next thing that makes some sense? Yes.

What choice do we have? Do I give a RAT'S ASS that there may be some technicality into how it was all set up? No f-ing way if it's going to make me not have to sit for the rest of my life and watch other's live their lives.

Could that happen to me? Hell yes, but I'm going to do EVERYTHING in my power to try and avoid it.

I'm tired of sticking a straw up my dick 3 times a day.
I'm tired of not taking a shit for 3 or 4 days in a row and then not having anything work other than "digital manipulation" (let you mind wander and think about doing that every day for about the lst 1500 days while you're suppopsed to be in a meeting or going to church).
I'm tired of kissing my wife and daughter goodbye as they go out the door on a long weekend or to an amusement park or something.
I'm tired of making steaks on the grilll and the effort required to just cook them makes me too dizzy to eat.
I'm tired of waking up in the morning and planning on just doing laundry and not being able to accomplish even that some days.
I'm tired of feeling not like a man when I try to make love to my wife.
I'm tired of watching everything I used to do outdoors get undone.
I'm tired of not being able to get comfortable no matter what I do.
I'm tired of finding EVERYTHING less and less interesting, like reading and watching TV as those are becoming the only things I can do.

All of us could make a list 10x that long.

Do you think that the CCSVI model makes no sense at all?
Do you think the current therapies make more sense? (if you say yes, you're exposing yourself as nothing more than a critic; the easist job in the world).
Do you think I ought to sit on my hands and let this fucking disease just have me?

This makes more sense than taking another immune modulating drug. We've all tried that. They obviously don't do dick once you actually start showing symptoms. So should we just keep paying for them and hoping they don't screw our bodies up?

So please tell me why in the world you wouldn't just say Good Luck and my thoughts/prayers are with you?

To me, only shooting down ideas and not offering any alternatives is weak.
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Postby robbie » Sun Jul 26, 2009 5:13 am

Do you think I ought to sit on my hands and let this fucking disease just have me?

When their is nothing for us lew it's not that were just sitting there letting this disease have us, unfortunately we have no choice
Had ms for over 19 years now.
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Postby Loobie » Sun Jul 26, 2009 5:41 am

I know Rob, I really do, but for me, I still feel like I have to do something because I still can get around a bit. You and I both know I understand your situation and that sitting in your position, there may not be much you can do. But I still can, and I think you'd agree, I have to. What I wrote was in no way meant to disparage people whose choices are limited, who have already progressed pretty far and may be in the place where it's all just damaged now. I don't even like saying that out loud, but it is what it is and it sucks. I don't for one second think you ever just sat around and didn't look for things or hope for things or whatever. I have to try this dude, and all the arguing on here simply reads to me like pointing out techicalities in the study and how they did this and that for exclusion criteria. That really doesn't matter to those of us who have gone ahead and done this.

My mom could get killed by a drunk driver tomorrow. The case could get thrown out because of a techicality but it wouldn't make her any less dead and arguing about the techicality in processing would do nothing but placate the lawyers. I really didn't mean to have what I said upset someone like yourself for 'not doing anything'. I fully understand (well somewhat) what you are going through and get why you aren't just beebopping around getting in trials and trying stuff like this. But let me ask you, if someone rolled out a procedure that could possilby work by fixing something that actually needs fixed and you thought it would work for you, would you do it? That's where I'm at, no more and no less.
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Postby catfreak » Sun Jul 26, 2009 6:01 am

Very well said Lew,

I see my life changing before my eyes and I don't like it. If this CCSVI helps with my headaches alone it will be worth it.

You've been on Tysabri, there have now been 11 PML cases, 5 in the last 2 1/2 - 3 months. That scares the crap out of me. When I started in March there had only been like 4 or 5 in 2 years, now boom!!!

I am ready to try the CCSVI Therapy. I am not looking for a cure from this, just some relief.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby robbie » Sun Jul 26, 2009 6:29 am

I still feel like I have to do something because I still can get around a bit.

just don't let it consume you man,don't miss anything now because your always thinking of beating this.
what I said upset someone like yourself

not at all ,when i read about you it's like reading about myself years ago and i totally understand where your at.
if someone rolled out a procedure that could possilby work by fixing something that actually needs fixed and you thought it would work for you, would you do it?

yes
Had ms for over 19 years now.
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Postby Loobie » Sun Jul 26, 2009 6:34 am

robbie wrote:
I still feel like I have to do something because I still can get around a bit.

just don't let it consume you man,don't miss anything now because your always thinking of beating this.
[quote]

I hear you loud and clear on that, I need to be cognizant of that.
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Postby chrishasms » Sun Jul 26, 2009 7:04 am

123
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Postby Lyon » Sun Jul 26, 2009 7:22 am

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Postby Rokkit » Sun Jul 26, 2009 7:28 am

marcstck wrote:As Bob has said, given a large population of people with a clinical diagnosis of MS, you will certainly have within them a significant percentage of people who have been misdiagnosed.


Several people are throwing this argument around. Of course just about any disease can be misdiagnosed, but is there a way of knowing how "significant" this number is for MS?

I would think there could only be speculation about that. If you know a patient is misdiagnosed, then they are not misdiagnosed, so you can't count them.

If you do a retrospective study and say, a ha!, X% of patients were misdiagnosed, therefore X% of patients now are misdiagnosed. That doesn't hold water either because diagnostic methodologies evolve all the time. Past results are no indicator of future performance.

So maybe the number isn't really that big, in which case it's not a big stretch to think that expert neurologists could have actually culled 65 "sure things" from the universe of CDMS patients for one venogram study.

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Postby whyRwehere » Sun Jul 26, 2009 8:07 am

I think the problem is, Bob, that you get all self-righteous and a bit mean in your arguments. Why can't you ask a question politely and stop trying to prove you have the upper hand, as you seem to think you do, so much. To be honest, you are a lot like my brother-in-law and people don't like him because he is a difficult person. I think you should see a therapist about this "trying to be more right than anyone ever all of the time" problem.
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Postby Lyon » Sun Jul 26, 2009 8:18 am

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