a change for the better?

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

a change for the better?

Postby scorpion » Fri May 21, 2010 3:14 pm

Interesting article. Kind of what I was talking about with the us vs. them mentality.


http://www.google.com/hostednews/canadi ... 7RjEekkZBQ
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Postby Lyon » Fri May 21, 2010 3:24 pm

I don't know where you find that stuff, but that was a good one!
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Postby mshusband » Fri May 21, 2010 3:31 pm

Not a bad article Scorpion ... let me counter it by saying that every time someone posts against CCSVI ... they use stories from neurologists. Neurologists who don't necessarily study nor practice within the vascular system.

CCSVI is a VASCULAR condition.

Let's hear from some interventional radiologists, vascular specialists ...

Who cares about the MS behind it if it's a recognized VASCULAR problem that seems to provide SOME people relief from their MS symptoms.

I think there are 3 main parts here.

1. CCSVI seems to play a role in MS ... there seems to be a link. I think we can all agree on that. I don't know the exact connection yet, cause, effect, at the same time ... whatever. But some role.

2a. After CCSVI being treated ... people with MS for long periods of time are still likely going to have neurological problems due to long periods of degeneration. I don't argue this. People who think EVERYONE is going to go out and dance after being in a wheelchair for 10 years are unrealistic if you ask me. I don't argue this. It's not likely to happen. Be realistic with your expectations. BUT it DOES need to be treated by a specialist (not a neurologist as all these articles seem to quote). Having occluded veins in the most vital parts of your body CAN NOT be good for you - so lets treat it regardless of MS and see what plays out.

2b. IF CCSVI pans out, and you're treated and whatever you benefit from it OK ... and say you're left with neurological symptoms, that is what a NEUROLOGIST should treat. SO I hope you didn't bust your neurologist up too bad ...

3. IF CCSVI does stop MS progression great. IF not maybe it buys time. Time to allow stem-cell treatments to gain footing. If you're left with neurological damage, maybe stem-cells down the road can fix that. Maybe that Biogen drug (anti-lingo or whatever) will do it ... (has anyone heard anything about that by the way? How the study is coming along? - that is a serious question by the way).

OK? So thinking neurologists should be commenting in these articles without a rebuttal from an interventional radiologist saying yes but it's not good to have stenosis in those veins in particular is like asking a democrat to say which direction america should go in without republican rebuttal.

That's my 4 cents.

I do think people who have had long term neurological damage need to be realistic with their expectations with regards to CCSVI treatment though. If you haven't danced in 15 years ... most likely you're not going to 1 day after treatment. Maybe 15 years down the road ... maybe not. Who knows ... but be realistic.

Pray for the best, expect the worst and likely you'll net out somewhere in between and that will be good enough for you.
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Postby mshusband » Fri May 21, 2010 3:43 pm

I also want to ask you ... and again this is a serious question.

How many diseases out there are "unexplainable" like MS at this time.

Think about MS rationally for a minute.

MULTIPLE = many
SCLEROSIS = scars

That isn't a disease if you ask me ... it's a condition. It's a byproduct. That is no definition of disease under any set of circumstances. It is just something you have.

How many other times does the body turn on itself and do something it shouldn't? Not that many ... usually they are caused by something going wrong from the outside of it ... or from within it.

I have many scars on my skin. Were they caused by disease? No. They were caused by cuts that bled from wrestling, and football and baseball - and everything else stupid I've done in my life.

So what's causing multiple scars within your central nervous system? Could it be the same thing? Little cuts and blood inside you that shouldn't be there? That are what breached the BBB that hasn't been able to be explained yet?

I mean ... don't you think by now with all the studies of human bodies with MS that they'd have found a common bacteria that caused this disease? A common theme among walks of life? A common ... oh ... they did you say? Occluded jugular veins and azygos veins? In HUNDREDS if not THOUSANDS of people now? No ... it couldn't be that though. That can't explain all this ... even though that was a theory 70 years ago.

You know some called Galileo Galilei (an Italian also - not that that matters) a heretic too ... and yet the smartest person on the planet today Steven Hawking praises his work.



Is it POSSIBLE ...

That's all I want ... an answer to is it POSSIBLE?

PS if your argument is research needs to be done. I 100% agree. Let's get it started though before we have people proclaim CCSVI is the be all end all ... or that it's to be dismissed.

Again ... is it POSSIBLE? That's all I want to know.
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Postby shye » Fri May 21, 2010 4:04 pm

I was examined by the neurologist interviewed, Dr Aaron Miller. He is very conservative--when I told him the incredible advances in my vision due to frequent Vit B12 (methylcobalamin) injections, he tried to talk me out of taking them--despite the fact both eye drs I'd seen (both listed in Best Drs in NY for a number of years running-and one the head neuro-optholmologist of a leading hospital) were astounded by the difference in my vision and in NO way discouraged the b12 shots.
Unfortunately Dr Miller is head of one of the leading MS clinics, so will continue to get good press.
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Postby Donnchadh » Fri May 21, 2010 5:55 pm

QUOTE:

Dr. Aaron Miller is a neurologist and head of the MS clinic at New York's Mount Sinai Medical Center. As the chief medical officer of the National Multiple Sclerosis Society, he tries to keep an open mind towards new claims about MS, noting that there are times when ideas from out of left field propel scientific advances.

He points to the example of stomach ulcers, which were long thought to be the product of stress. Then Barry Marshall and Robin Warren, two Australian researchers, proved they are caused by a bacterium, Helicobacter pylori and are treatable with antibiotics.

Marshall and Warren won the 2005 Nobel Prize for Medicine. Still, those kinds of paradigm shifting successes aren't everyday occurrences. Miller suspects CCSVI isn't going to join that list but he fears that answer won't be arrived at quickly or cheaply.

"We know that research dollars are extremely scarce, especially these days. And when you have to divert large sums of money to investigate something that's probably going to be barking up the wrong tree, it certainly is distressing," Miller says.

UNQUOTE.

This says it all; he has already made up his mind.

CCSVI is a vascular condition...I don't want a dentist (no matter how good they are as a dentist) to treat it. And that apparently includes neuro's...give me a Interventional Radiologist or vascular surgeon and let them correct the venous problems.

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Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!
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Postby scorpion » Fri May 21, 2010 6:10 pm

I agree. If I had heart problems I would want to see a cardiologist and not a neurologist. That said you can not say the neurologist has no knowledge of the cardiovascular system. After all they DO have to go through medical school.
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Postby Donnchadh » Fri May 21, 2010 6:25 pm

When I told my doctor about CCSVI and showed him articles and venograms of collateral veins, he was immediately impressed and wanted to know more. He grasped the connection between venous problems and MS-he has sent patients to neuro's for years with no improvements (we now know why).

Donnchadh
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!
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Postby Brainteaser » Fri May 21, 2010 6:44 pm

BTW, medicine is not the only professional area where the internet is empowering individuals. It is also happening in law, engineering, architecture, accountancy - you name it. Probably even in landscape design too, eh Bob? :wink:

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Postby Lyon » Fri May 21, 2010 7:18 pm

.
Last edited by Lyon on Mon Nov 21, 2011 4:11 pm, edited 1 time in total.
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Postby scorpion » Fri May 21, 2010 7:31 pm

Brainteaser please refer to Jimmylegs comment on an earlier thread. He asked that people refrain from making derogatory comments to other members on this board. In my 39 years of life I have worked as a cashier at a grocery store,waiter, factory worker, and a social worker. I am sure many of us have varied jobs that we may love or hate that we do every day to put food on the table for our family. We are all going to make an effort to be respectful of each other. I kindly ask you do the same.
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Postby whyRwehere » Sat May 22, 2010 1:00 am

Being a gardener is probably the most important profession in this world...in fact that is the profession I put on my wedding certificate...sure beats unemployed...
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Postby costumenastional » Sat May 22, 2010 3:08 am

It s a good article indeed. Only because it is obvious that they have realized that there is a big wall nowadays which they cannot overcome. It's called "MS patients have the right to decide on their own". For better or worse...we ll see.
It s a good thing to see that neurologists acknowledge our need to explore. It is good that they begin to realize that they do not own us even if we are wrong (which of course there is no way for them to know yet).
I might take it further and say that they know now, that all they can do is watch the story unravel. After all, they will be there for us whenever we need them. No worries there. We are PAYING them. We own THEM. And for the first time, they know it. This is something on its own.

The situation that this article describes is true.
Yet, no article to this day has ever answered the big question: why should MS patients not check their veins out? Every time i read something against Zamboni's theory it has something to do with stent migration and death which of course is not true. And if it was, it would have nothing to do with Zamboni. The masses have become difficult to manipulate since information is free via the internet.
It is obvious, even to an untrained eye that many doctors are trying to fight CCSVI with plastic bullets and speculations. The link between ccsvi and ms has already been made but all they do is trying to stop people from having a simple doppler in their quest for a better quality of life.

On the other hand, more and more vascular specialists are treating patients. Arent they doctors too? They know a bit of medicine also. I have MS and i had very bad flow in my jugulars and my azygos. WHY should i be left untreated? Having MS makes me a noncandidate for the rest of the conditions i may have? And if so, why?

At this point, more and more research is needed. The way i see it, if this huge MS patients movement didnt exist, NO RESEARCH would be done whatsoever. And this can only be described as victory. Even if it turns out to be money thrown out of the window, no regrets. The millions they have already spent for useless and dangerous drugs gave the pharmaceutical companies billions in return and nothing to us.

We all have to realize that history is being written here. There is probably a connection between vascular issues and MS at least for some of us. After all, every demyelinating disease is named MS by "specialists" until proven otherwise. As long as we see CCSVI as the start of a new era we are good. We must help in any way we can so people who will be diagnosed in the future will have better options rather than more toxic, potentially lethal, expensive drugs.

Lets see this situation as exactly what it is: patients suffering from a chronic progressive uncurable condition taking things in their hands. There is nothing wrong in this. And there is nothing for us to loose. I for one will never feel guilt no matter the outcome. There is no way for someone to make the wrong choice when there are no options people.

There are probably many more factors involved in this disease's course.
I dont believe that the liberation procedure will free all of us from MS. But i think that taking the ball game to a whole new level is something that has to be done. So far, all MS researchers FAILED. Big time.

I have every right to speak. Like we all do. I did some serious chemo, like many of us have done. I know it doesnt work. I know it targets my immune system only to stop relapses. Is this good? I guess... Is it enough? No. It is not. It clearly has NOTHING to do with what triggers my body to act like this. All i hear is for new drugs coming up. All i hear is statistics and numbers concerning relapse rates and NEVER stopping progression.

All i want is for new avenues to be explored. And i am happy that the ccsvi train cannot be stopped any more. Because in a couple of years time we ll know if there is hope or not. What if there is? Dont let them get in your heads. See for yourselves. That simple.
Last edited by costumenastional on Sat May 22, 2010 4:20 am, edited 1 time in total.
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Postby costumenastional » Sat May 22, 2010 3:20 am

Lyon wrote:Or maybe it's more accurate to consider that we are keeping ourselves occupied until the day that we read about the cure for MS in the newspaper.


It's a thought...
But you ll never read it if you dont participate. You will only be reading about pharma stocks rising skyhigh.
Except if you think that CCSVI would have gone so far without us. But you know better than that...

It s not only about CCSVI.
If something else comes out which sounds so promising, i ll be around to push for more research. Again.

And again.

And again.

And again.
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Postby Brainteaser » Sat May 22, 2010 7:05 pm

XX
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