This Is MS Multiple Sclerosis Community: Knowledge & Support

(CCSVI x time x unknown detrimental factors) / unknown ameliorative factors = MS

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

Thanks for posting the letter, esta, it shows his current thinking about many relevant issues. I've posted it on my blog for MSers and their caregivers to read, since it answers many questions.
...Ted

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Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com

I think everyone still thinks there is some unknown here ... I don't get that.

Why is there an unknown? Why can't it just be that time is the big factor?

For instance my wife has numbness ... it's always there. BUT some days it just goes away ... the next day it might be back.

Anyway ... what causes it to go away on these days it does? Probably some flap or leaflet or something works properly so the veins don't get starved of oxygen that day. Then the leaflet/valve/flap gets stuck again and the numbness returns.

Otherwise ... to my semi-highly educated mind ... there really isn't much other explanation.


I think you guys get so caught up in the "unknown origin of MS" that has been played to you for so long ... you sort of believe it too. Even when this deoxygenated/dead blood/iron theory might just be "it".

I say might ... but I believe it.

After all look at the people this has helped the most ... people with newer MS ... because the damage isn't completely permanent yet.

However, those with older MS regain some ... time it took to accumulate may take to relearn/reheal/regrow ... we'll see (that's the part I don't know ... but it seems that's the truth of the way it is so far).

There are obviously unknowns. The human body and health and nutrition and genetics and environment and all of these things form so complex a system that I don't think there will ever not be "unknowns".



"Anyone who says they understand quantum mechanics doesn't understand quantum mechanics"

"the "paradox" is only a conflict between reality and your feeling of what reality "ought to be."

-Richard Feynman

(Maybe an extreme comparison, but it's my comparison)

Myelin regeneration, and repair of axonal damage... I would think are the other factors, but healthy lifestyle could only help.

HEY

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"Never argue with stupid people... They bring you down to they're level and beat you with experience"

Thank you for posting Dr. Simka's letter,

did anyone else have the feeling that the effects of angioplasty is only going to be temporary?

I had an uneasy feeling reading the letter, like after flying half way across the planet and having the treatment done, that things are going to go back to the way they were before going to Poland.

Am I the only one who felt this way??

I"m not criticizing, just feeling a bit worried that time and money may have been wasted.

Has anyone had angioplasty a while ago, that is still having positive results?

thank you....

Annie, Zamboni only does ballooning, and some of his first patients have been OK for over three years. Yes, there is a chance for restenosis, which is a good reason to a) allow them to put in a stent, if they advise it and b) make noise and kick butt and get things moving on this side of the Atlantic. But if you just get ballooned and then find out you have to go back to Poland before they get your act together in your own country, at least you'll be pretty sure it's for a good reason.
...Ted

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Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com

These past few months have been an emotional rollercoaster - but I've learned many interesting things - and tonight's read is no exception.

On the issue of medicine as a hair salon, I don't think that is the ask: but I'd like to hear people's thoughts on the balance of the medical ethical guidelines:

Autonomy - the right of the patient to choose treatment and make informed health decisions;
Beneficence - the obligation to do the most good;
Non-maleficence - the obligation not to do anything bad; and
Justice - doing the right thing vis a vis the community as a whole.

In the case of treating CCSVI in MS patients, does the theoretical unknown risk of treating (on-maleficence) outweigh the other factors? Is the risk of harm greater in MS patients?

I understand this to be the ethical analysis. I simply do not see how informed MS patients can be denied the opportunity for treatment on these ethical criteria - but I would love to hear the other side of this. I want to be convinced that the powers that be really are trying to do the right thing according to medical ethics.

Giving people a dangerous procedure for a condition that may or may not exist outside of a controlled study is probably unethical.

Nick - the ethical issue is also intertwined with a legal issue. Even with informed consent, hospitals and doctors are unwilling to put themselves in the position of being sued for performing an "experimental" procedure. One only needs to look at this message board and the many cries for suing everyone under the sun to appreciate their reluctance. Hence the need for an IRB approval and other checks. It's not the best system, but it's the one we have.

Thanks concerned,

at what point do we get the comfort that (a) this is only as dangerous as angioplasty; (b) the condition exists.

From the testimony in Canadian parliament this week; 1000 people have been tested and 500 people treated - albeit not all in the trial setting. Was all of this untrial treatment - unethical. The patients sound generally better off, and rarely worse off, informed of the risk and responsible for their own care.

At what point should the public be satisfied that parallel treatment and research can go forward - as seems to be happening in Albany - but in less specialized research centres (albeit still by qualified NIRs)?

I'm not trying to be flip or argumentative - really looking for your opinion on this.

Well even if it is only as dangerous as angioplasty that is still pretty dangerous and new research is showing that angioplasty is an overused and under-effective surgery. Secondly, when Zamboni or whomever posit a mechanism for venous "reflux" that is accepted by other medical researchers and give a quantifiable measure of "narrowing" or "stenosis" or "reflux" then i think your queries should be answered?

And what is showing that the patients sound generally better off?

That is great, thank you for posting the letter. I have sent it around all of my MS related friends.

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<em>Badger
RRMS 2004</em>
Appt Katowice 23/24th March

I think we tend to think there is an unknown factor in MS other than CCSVI because that's the only way to logically explain people without MS having CCSVI. I think we'll learn more about that as more BNAC trials and tests are done but I have to assume not every control without MS and with CCSVI will eventually develop MS.

Concerned, can you provide your sources?

a. What research indicates that angioplasty is overused and under-effective?

b. After reading this thread alone, do you not have first-hand testimony from patients that sound better off?

The issue here is simple. Allow patients to weigh the risks and benefits of the treatment for themselves. Make the treatment available for those patients that wish to have it.

Cancer patients are encouraged to use lifestyle changes along with surgical and medicinal treatments as necessary to beat the cancer. Why can't MS patients pursue ALL available options?

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Three veins angioplastied.  One renewed life.