CCSVI skeptics

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

Postby notasperfectasyou » Wed Jun 03, 2009 6:55 pm

So here's a thought.......

If the blockage is in the system of arteries you get stuff like Atherosclerosis and stroke. If you wait until you are beyond the capillaries and into the venous system ....

.... you get MS!?!?!?

So, this begs the question, what other conditions do we know of that result from blocked venous system and DO FOLKS WITH MS GET THESE CONDITONS MORE OFTEN THAN NON-MS'ERS?????
User avatar
notasperfectasyou
Family Elder
 
Posts: 774
Joined: Thu Feb 09, 2006 4:00 pm
Location: Northern Virginia

Advertisement

Postby chrishasms » Wed Jun 03, 2009 8:21 pm

123
Last edited by chrishasms on Sat Dec 05, 2009 1:40 pm, edited 1 time in total.
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 3:00 pm

Postby skydog » Wed Jun 03, 2009 9:24 pm

I for one will not take a skeptical view on something that makes too much sense. Before coming here and seeing all the different treatments tried and not proven CCVI goes way beyond my expectations for the next best step in turning my life/health around. My only concern is the stents are forever a foreign substance in my system, but hells bells there are post war vets with enough shrapnel in them they rattle when they walk and have lived into their ninety’s. Not in a position to wait and see... I am keeping my date with Dr. Dake. Peace !!! Mark
Plant a BIG Garden Live in the Moment
User avatar
skydog
Family Elder
 
Posts: 306
Joined: Tue Feb 24, 2009 4:00 pm
Location: North Oregon Coast

Postby CureOrBust » Thu Jun 04, 2009 5:34 am

robbie wrote:Does everyone with ms have blockage in their jugulars or somewhere? what if a person with ms goes to see Dr Drake and shows no blockage anywhere does this mean that the CCSVI theory crashes
Robbie, the opposite is actually starting to concern me; ie the 100%. I'll explain.

Looking at the history of treatments for MS, there have been many cases where people have been misdiagnosed, yet this treatment has "failed" in one sense, to identify any misdiagnosis (yes, I understand that blinding provides a similar function, and Zamboni blinded the testers). For example, the first person to die from Tysabri was later found to not even have MS; I am sure the doctors were careful on that diasgnosis. And then there's that disease (overly thick blood, forgot the name :oops: ) where 10% of MS diagnosis are actually "it", and 90% of those diagnosed with "it", were originally diagnosed with MS.

Then there is the my growing suspicion over the fact Dr Dake is only finding Jugular issues, yet Zamboni found many other issues being common. Yes I understand Dr Dake has only checked a small number of people at this stage, but the odds were against this result. I am sure Dr Dake would be wondering on the same.

Note, I am heading in for an MRV next week. :) and a reflux was found in my jugular when I had a doppler test performed.
User avatar
CureOrBust
Family Elder
 
Posts: 2883
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

Postby whyRwehere » Thu Jun 04, 2009 6:24 am

That was "Hughe's Syndrome"....I was wondering if those people also had difficulty because of blockage plus thick blood.

That's great something was seen on your doppler. My husband's first doppler saw "nothing unusual", but we have another one coming up, where the (other)doctor is knowing where to look, so perhaps more to say later.
User avatar
whyRwehere
Family Elder
 
Posts: 908
Joined: Mon Oct 03, 2005 3:00 pm

Postby MaggieMae » Thu Jun 04, 2009 6:43 am

Not only is there MS in my husband's family, but also one member with Hughes Syndrome. Since I began to read about CCSVI, I've wondered if there could be a connection.
User avatar
MaggieMae
Family Elder
 
Posts: 380
Joined: Wed May 23, 2007 3:00 pm
Location: Pennsylvania

Postby mrhodes40 » Thu Jun 04, 2009 6:55 am

My primary care doctor says that nearly all people with chronic diseases like MS have coagulation issues that are termed "variant antiphospholipid syndrome" Huges is "antiphos. syndrome"

In people with chronic disease like MS, she finds a different coagulation problem having to do with fibrin and thrombin being overly high. When she tested me my thrombin was over 1,000 when somethimg line 200 is normal. So I at least do have an issue with "sticky blood".
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
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Postby robbie » Thu Jun 04, 2009 7:05 am

I have issues with the people who yell the loudest about this disease yet doing nothing extraordinary to fight this bitch.

I was asking some questions for !@#$ sake like I said I will stop.
Had ms for over 19 years now.
User avatar
robbie
Family Elder
 
Posts: 1148
Joined: Thu Jan 27, 2005 4:00 pm
Location: Northern Ontario, Canada

Postby mrhodes40 » Thu Jun 04, 2009 7:29 am

It's reasonable at this point in time to be skeptical IMHO. I think this is really promising but that doesn't mean it *IS* the real deal. Like Marc, for me it is the best thing to come along in some time, so I am glad to volunteer to be a lab rat so the work can go forward.

But people who want to wait are being perfectly reasonable it seems to me. This will work out with time, early adopters will not have any advantage over others, we'll all get treated if this is "it". :wink:

What I find makes me crazed is the refusal to admit that the "approved therapies" are in fact working from an unproven theory about MS. Lab rats given myelin peptides do not get MS they get a self-limiting, curable, temporary demyelination. Not the same at all.

In my mind this is no different at this point, EXCEPT we have an actual physical anomaly that we can see that we are able to address and reverse.

I'd like to see lab rats get MS with blocked jugs though, and good follow up on Zamboni's liberation 100, and other people doing the work as well. Without all of that it is still a promising idea that seems to be panning out but nothing more.........
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
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Postby chrishasms » Thu Jun 04, 2009 8:21 am

123
Last edited by chrishasms on Sat Dec 05, 2009 1:40 pm, edited 1 time in total.
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 3:00 pm

Postby mrhodes40 » Thu Jun 04, 2009 8:32 am

Someone PM'd me about this comment I made
for me it is the best thing to come along in some time,


and I need to clarify that I meant the theory is the best thing to come along for some time, I am not implying some miraculous cure. so far I am limited in terms of results to heat sensitivity reduction. I am still in recovery mode thugh I had a complication with my femoral access and blood went into my abdomminal muscle so I am pretty much resting. hard to see if I walk any better or anything ....... can't tell
marie
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
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Postby robbie » Thu Jun 04, 2009 9:54 am

Hey Robbie I didn't mean to piss you off even though its extremely easy to do. I was just curious what if anything you have ever done that has been outside the box your current neuro put you in, or is it only what the doctor says? Keep in mind most neuro's want you to slowly progress so they can make them money off you over an extended period of time

This has nothing to do with weather or not I am willing to go outside the box or not, at this point in my ms I am done trying and none of you are so I’m a fish out of water on this site. I just like to ask questions and keep things real. when you say I’m easily pissed off your right , most of your comments about being cured and that whole have/ had thing made me wonder about you and your situation but I’m not really pissed off I’m just tired of all this. I have a course of prednisone to take prescribed by my neuro because she knows it will make me feel better if only for a short time and it costs $15 so I don’t think she made much from that. If I can I will wait until July and hopefully i will feel good for some social things my wife and I have. I think what really sucks is that anything you read about on this site will be years and years in the making and time is just not on our side. Good luck to everyone and keep up the good fight
Had ms for over 19 years now.
User avatar
robbie
Family Elder
 
Posts: 1148
Joined: Thu Jan 27, 2005 4:00 pm
Location: Northern Ontario, Canada

Postby cheerleader » Thu Jun 04, 2009 10:28 am

robbie wrote:[ I have a course of prednisone to take prescribed by my neuro because she knows it will make me feel better if only for a short time and it costs $15 so I don’t think she made much from that. If I can I will wait until July and hopefully i will feel good for some social things my wife and I have. I think what really sucks is that anything you read about on this site will be years and years in the making and time is just not on our side. Good luck to everyone and keep up the good fight


Hope the steroids make things easier for you, Rob. It would be nice to get a break and enjoy some social stuff...the steroids really helped Jeff, too. They can make a huge diff. in quality of life.

I actually agree with you, Rob...time is always on the side of the recently diagnosed, not those that are further along in the disease. We have yet to see if this stent treatment for CCSVI will help those further down the road in disabilities and disease duration. Marie, Sharon and Holly will be the first to say Amen to that! But for Jeff, who was recently diagnosed and had all brain lesions except for one on his cervical spine...this has been a huge help. He feels like himself again prior to diagnosis...and that's why I want to get the word out.

For those just starting the journey with MS, this treatment can be a major advancement. We'll have to wait to see MRI results later this summer to know if healing is going on. And we'll have to wait longer for those who have had MS longer. But this isn't going to take lots of years, Robbie...we'll know sooner than later.
peace bro-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5015
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby chrishasms » Thu Jun 04, 2009 11:35 am

123
Last edited by chrishasms on Sat Dec 05, 2009 1:40 pm, edited 1 time in total.
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 3:00 pm

Postby mrhodes40 » Thu Jun 04, 2009 1:44 pm

I just want to throw in here thank you to eveyone who is dicussing and debating this new idea and thanks especially to those who have volunteered to put themselves in the front line. Even though I am one of them, I am grateful to every other person doing it too because my "data" by itself means nothing whatsoever so I am glad to hear every one else's story too.

The work done here the MRI's MRV's etc will illumine the truth about what exactly is going on here, and it can't happen soon enough for us...of course if the data is good enough all the skeptics will be glad as those of us who got on board with this early....... skeptic just means not enough information to convince me.....yet.

I hope that this is the final days for MS.
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
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users