CCSVI skeptics

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

Postby Loobie » Tue May 19, 2009 4:01 am

I guess why wouldn't they be? I mean it's like convincing a millionaire entepreneur he needs to change his ways. His actions to this point have led to millions. A new technology comes along that makes 'his way' obsolete. He resists it because he's made a blue fortune doing it "this way" and he'll continue to do so. You can't blame him. You just have to make sure you have your eyes wide open so you don't go down with the ship with him.

I'm not married to this idea. If it doesn't work it will be time for next. However, there have been some pretty convincing arguments about why it MAY work.

How's that different than the boat we're in now?
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Postby sou » Tue May 19, 2009 5:21 am

Hi all.

peekaboo wrote:oh sou...so sorry to hear the "verbal abuse" you had to go thru..


Abuse? No! Actually, he gave me a terrific idea for handling doctors in the future! Pretending to be an hypochondriac I got the prescription!

The vascular doctor is a very nice person and has met Dr Zamboni in person in the past. But he cares mostly about my life and less for my MS. However, he is curious about the results and referred me to a specialized radiologist to have the 5 tests of the study done, even though he told me to stop wasting my time and poison my mind with studies.

I don't care about being called names. Since when are curious people hypochondriacs?

Like a doctor had said once, "It is a blessing that nature has not read our books or else there would be no hope!"

sou
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby CureOrBust » Tue May 19, 2009 7:28 am

Reading through this thread, I kept thinking "What will it take to convert the sceptics to believers?"

i. X MS Patients with MRV's
ii. Y years of improvements
iii. Z years of no new lesions or dissability progression
iv. ????????

Lyon, you explicitly came out saying you are a sceptic. Did you mean complete sceptic or just partially sceptical?

I myself am still a little bit sceptical. However, after Jeff and Marie, I will be gunning for an MRV tomorrow, big time. My plan of attack is to get the tests performed (and they will be expensive, I know MRI's are) then take the results to my Neuro and a vascular specialist (if it isn't the person that originally gave the referral for the MRV; GP's can't schedule MRV's here in Aus).
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Postby notasperfectasyou » Tue May 19, 2009 7:32 am

Lyon is skeptical because I'm interested in it. ;)
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Postby cheerleader » Tue May 19, 2009 8:18 am

I actually think it is wise to be skeptical... (I know, how unlike me!)
this is an entirely new paradigm, and venous stents do have risks (related to patency). If Jeff was young and had little/few MS issues, he'd be waiting for others to step up and get tested, get stents, read the research, consult with his neuro and consider his options.
But he's been hurting for awhile, and we had access to a doc that was interested in the research. He's also a really brave guy.
Anyone who has been thru other trials (tovaxin, revimmune, etc) can speak to how important it is to measure risk vs. gain. Nothing in life is guaranteed, but if Jeff hadn't stepped forward as the first in the US, and Marie the second, we'd be waiting longer. And some folks have run out of wait.
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Postby peekaboo » Tue May 19, 2009 8:22 am

So true Cheer :!:
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Postby Loobie » Tue May 19, 2009 10:37 am

Hell, I'm getting paranoid waiting until July! When you get a bunch of progression in a hurry it will scare the crap out of you. So I feel like I've run out of wait even though I probably haven't. Tysabri has helped/stopped my progression and I really don't have a good reason to think it will all of a sudden just stop, so I'm probably paranoid without reason. But then again is paranioa reasonable at all?
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Postby notasperfectasyou » Tue May 19, 2009 11:29 am

Cheer,
I couldn't decide which thread to put this in, so here goes ....

For those who are still thinking about it, might it make sense to take one of those 81mg aspirins daily? Not to mention other benefits of taking the stuff.

We get more fatigued with exercise. Kim's aqua aerobics class can knock her down a notch for part of the day. If we followed the one-a-day 81mg protocol, shouldn't that help ... even a tiny bit?

Maybe there needs to be a thread for complementary things folks can do while they are "considering" this.
Ken
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Postby dignan » Tue May 19, 2009 11:31 am

Paranoia is reasonable if someone (or something) is out to get you.
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Postby Sharon » Tue May 19, 2009 11:41 am

Loobie wrote:

But then again is paranioa reasonable at all?


A college psych professor use to tell us that paranoia is reasonable if someone is out to get you :wink: Hmm - somedays I think MS is out to get me

I have been a skeptic of the MS drugs; therefore, have not taken any except for LDN. I admit that my EDSS is not as bad as some, and I was lucky because the MS deficits really did not show up until my late 50's. The CCSVI model makes sense to me and, as others have pointed out, because this is a new paradigm there will be months of debate about it.

Sharon
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Postby patientx » Tue May 19, 2009 11:43 am

notasperfectasyou wrote:Cheer,
I couldn't decide which thread to put this in, so here goes ....

For those who are still thinking about it, might it make sense to take one of those 81mg aspirins daily? Not to mention other benefits of taking the stuff.

We get more fatigued with exercise. Kim's aqua aerobics class can knock her down a notch for part of the day. If we followed the one-a-day 81mg protocol, shouldn't that help ... even a tiny bit?

Maybe there needs to be a thread for complementary things folks can do while they are "considering" this.
Ken


Ken,

You're probably already aware of this, but there was a trial studying the effects of aspirin on MS fatigue:
http://www.clinicaltrials.gov/ct2/showN ... rin&rank=1

This was a couple of years ago, and I'm not sure what the result was.
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Postby cheerleader » Tue May 19, 2009 11:58 am

Ken...
maybe I'll get a complimentary treatment thread started here. I asked Jimmy to add her zinc info.

Sorry Kim is getting wonked after exercising. She's doing the right thing keeping her body moving, but if deoxyginated blood is having a hard time getting back to her heart, that could create some fatigue.

Certainly a baby aspirin can't hurt (not so great on the stomach lining)...but there are many, many things MS patients can do to keep their circulatory systems moving and healthy. That was what the endothelial program I wrote up was all about:
http://www.thisisms.com/ftopict-6318.html

Low fat diet, proteolytic enzymes, antioxidants, regular exercise, meditation, sunshine/vitamin D all keep the blood from hypercoagulating and keep the endothelial layer of blood vessels healthy. This is the program I sent to Dr. John Cooke at Stanford last year (he is a researcher on endothelial health in cardiovascular disease) and he is the man that put us in touch with Dr. Dake.

I believe this is why so many of the complimentary/alternative treatments MSers use keep people healthy and in remission. They are dilating blood vessels and maintaing endothelial function with with prokarin, good diets, exercise, supplements, LDN, etc.

Jeff was "stable" and not progressing on this program...but I don't think he would have found long term healing without dealing with his stenosis. Some people (with more benign MS/less blockage) can do just fine without any further intervention-
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby notasperfectasyou » Tue May 19, 2009 12:39 pm

Duffy, Paula and Zurier, Robert 1979 Lymphocyte Adherence in Multiple Sclerosis: EFFECT OF ASPIRIN

I know it's old, but you get the entire article. You need to take more than two in order to get the effect, but that wasn't entirely the point.
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Postby Loobie » Tue May 19, 2009 1:36 pm

My dad always said, "just because you're paranoid, doesn't mean everybody's not out to get you" :wink:
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Postby Lyon » Tue May 19, 2009 1:36 pm

..
Last edited by Lyon on Fri Jul 29, 2011 1:06 pm, edited 1 time in total.
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