CCSVI concerns

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

Postby Cece » Tue Mar 09, 2010 5:55 pm

Since I've been on Copaxone they've added a warning to watch for odd rashes. Apparently one rare side effect has been to have the a significant layer of your skin separate and fall off. It is a dangerous condition.
"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
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Postby Cece » Tue Mar 09, 2010 6:12 pm

justjazz wrote:I, however, am not getting worse each day. I am completely stable and in a lot better shape than a few years ago thanks to existing medications.


I think you are wrong...bud. If you have m.s., it has been shown in studies that even during periods of seeming remission, active damage is still occurring. I do not doubt that you are in better shape, but this is typically due to the brain rerouting around the areas of damage (not through them).

Permanent damage occurs early in the disease process. Our brains are full of Normal Appearing White Matter (NAWM), not actual normal white matter.
"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
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Postby justjazz » Tue Mar 09, 2010 6:57 pm

Cece wrote:
justjazz wrote:I, however, am not getting worse each day. I am completely stable and in a lot better shape than a few years ago thanks to existing medications.


I think you are wrong...bud. If you have m.s., it has been shown in studies that even during periods of seeming remission, active damage is still occurring. I do not doubt that you are in better shape, but this is typically due to the brain rerouting around the areas of damage (not through them).

Permanent damage occurs early in the disease process. Our brains are full of Normal Appearing White Matter (NAWM), not actual normal white matter.


I came on to this forum to express my concerns over this new procedure and I get these kind of comments. Well, I am not wrong Cece, I know my body slighter better than you. I think many of you have been intoxicated with Zamboni syndrome, and I feel it may have clouded your minds, much like the effects of a cult-like religion. I'll stick to the M.S. society forums where at least I can expect some objectivity and factual information. Sheese.
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Postby L » Tue Mar 09, 2010 6:58 pm

justjazz wrote:over anectodal claims


If they were then I wouldn't be here and while they were I wasn't but now that they are not merely 'anecdotal' I am!

You are doing well on ABCs, many people aren't and we haven't got the spare time to wait around for rigorous trials..

But good for you for having the luxury of time on your side. Although a relationship between CCSVI and MS is proven by the Buffalo study, CCSVI being the cause of MS has not. I would bet my life that it is the cause though.

-edit- that 'good for you' sounded as if it could be a tiny bit dismissive but really, I'm glad that you're doing well.
Last edited by L on Tue Mar 09, 2010 8:37 pm, edited 2 times in total.
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Postby Cece » Tue Mar 09, 2010 8:27 pm

Acute axonal damage in multiple sclerosis is most extensive in early disease stages and decreases over time

http://brain.oxfordjournals.org/cgi/content/abstract/125/10/2202

For me this is compelling enough to seek treatment, whatever treatment you seek (and the CRABS have that 30% efficacy, there are oral pills coming out, and yes CCSVI treatment is among the options) very early in the process.
"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
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Postby costumenastional » Wed Mar 10, 2010 3:36 am

Cece, dont bother. It is obvious that scientific papers are not for everybody to read... After all some patients are lucky enough to have their God sent neuros to take care of them.

Justjazz, i understand that ms patients who have had the disease for many years were dxed when screening technology and such were in their infancy. Most of them, and you also i suspect, had to go with whatever they were told. Dont get me wrong, i would do the same. No options whatsoever. It is sad that you seem not to know more nowadays though.

On the other hand, if you take some serious time to READ, you will SEE that your brain volume dicreases in rates that the difference can be seen in a matter of a couple of months. Either you understand it or not is not the issue scientifically speaking. It is happening to all of us and as they are trying to find really effective drugs they are monitoring stuff that happen in your brain and spine regardless of symptoms.

It is incredibly nice that you are doing so well and i hope you continue to do so. But, as i see it, you are just another person in denial and the worst part is that you expect from others to rely on fake and dangerous drugs. Do you really think that if your ms was agressive copaxone would keep you straight? If so, it would be better for you to stick in the ms societies sites indeed, cause obviously there are a lot more useful info there for you.

I am surfing this site way longer than you do and all i can see is people who know what they are dealing with. No religions, no other crap you are implying. And noone is trying to make you put a stent or something. We are just trying to push the research further and some of us

MAYBE CURE YOUR DISEASE BY PUTTING OURSELVES IN LINE FOR CCSVI TREATMENT.

I would strongly suggest that you thank us as well as for people who did the same thing by testing the crabs you are so proudly on.
Anyway, your lack of respect is what really sucks.

I wish you my very best and i hope you will never have to seek for a more effective treatment.
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Postby Lyon » Wed Mar 10, 2010 5:35 am

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Last edited by Lyon on Mon Nov 21, 2011 6:11 pm, edited 1 time in total.
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Postby costumenastional » Wed Mar 10, 2010 5:52 am

Lyon, maybe you should read better before jumbing into conclusions. There are posts here (including mine) that in no way dismiss ccsvi credibility concerns.
We are all sceptics here, noone knows if ccsvi is beneficial for everybody etc etc. Did you read somewhere that ccsvi is the cure already? Did anyone try to convince Justjazz to put a stent? Or you are just playing the wise guy?

And the person who started the thread is actually the one who caused reactions with her superficial attitude. READ MAN.

Pfff, english is not my native language but it seems that i can understand better than others...

I DONT KNOW IF CCSVI IS REAL!!!!!!!!!
ONLY LIBERATED PEOPLE MAY SPEAK ACCORDINGLY!

But it is so good that everyone has the right to an attorney....
Last edited by costumenastional on Wed Mar 10, 2010 5:57 am, edited 1 time in total.
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Postby suze » Wed Mar 10, 2010 5:56 am

I really enjoy these debates. That you all care enough to put a point of view is fantastic!
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Postby costumenastional » Wed Mar 10, 2010 6:04 am

As long as we think before we write that is.
You see, poor ccsvi sceptics get killed here.
So funny i am one of them and i am still alive without having others to "support" me.
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Postby suze » Wed Mar 10, 2010 6:37 am

I think that having an opinion and reasons for holding it is really healthy! Thinking and debating is a journey. And fun!
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Postby Lyon » Wed Mar 10, 2010 7:08 am

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Last edited by Lyon on Mon Nov 21, 2011 6:11 pm, edited 1 time in total.
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Postby L » Wed Mar 10, 2010 7:30 am

Lyon wrote:AWESOME! Perfect record. Another questioner of the theory of CCSVI driven off!

If setting up an environment in which one only hears what one wants to hear bolsters creedance of a theory, CCSVI will certainly be proven true despite an absolute dearth of evidence.


No one's been driven off! JustJazz expressed their reluctance to back a theory without further testing and people here expressed a faith in the treatment based on the available studies and the need for haste.

That no one agreed with jj isn't indicative of an intention to drive them off, merely that no one agrees with them! Except for you, and you posted to that effect. If you want to convince me as to why I'm wrong in wanting CCSVI treatment then go for it. I should imagine though that if your wife (or you) were in the state that I am and time were not on your side then you too would, after consideration, opt for angioplasty instead of waiting for years. Pascal's wager.

And I think that people expressed their opinions fairly and politely and not with the sort of language that you drive people off with.

Your over reacting in my opinion.
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Postby akaheather » Wed Mar 10, 2010 7:53 am

As much as I hate to get into this fight ....

I am tired of this debate. Like all "heavy" debate topics, this one is difficult because each side has it's own merits.

The bottom line is that the current MS treatments are NOT good enough and that more research needs to be done.


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Postby capegirl » Wed Mar 10, 2010 9:26 am

I have read the discussion with interest and a little humor. It always amazes me that everybody can differ in opinion, level of risk taking and experiences with drugs and doctors. I believe CCSVI offers real hope and a realistic physical cause for MS. Having had MS for the past 14 years and having had terrible and very frustrating experiences with numerous neurologists I see the testing and treament of CCSVI as the future for MS. I do not think it is because I didn't "luck out" with a neurologist that I didn't get along well with drug therapy, I think it was in a large part due to their lack of knowledge and ability to see that not everyone fits into the same hole as the drug companies' research say they should that caused a major error on the doctors part. As one doctor told me later "I was poisoned" by the drugs that were prescribed for years. There have been at least one patient that I know of that had serious side effects to Copaxone, I am living proof of this but I had to figure it out for myself. I think that the drug companies have so much power, control and money in our health care system now that is is time that we took back some of the control. That is why I see the CCSVI option as positive and refreshingly optimistic, no drugs. I am in full support of it and will gladly be tested as soon as I can and have the procedure done if necessary.
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