must speak up

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

must speak up

Postby scorpion » Sun Jul 19, 2009 7:31 pm

I have contained myself as long as I can before exploding!!!!! Please people, step back and think about this CCSVI stuff!!!!!! The only thing I have seen so far is people suffering and spending their money to MAYBE clear some brain fog. I understand the desperation but I have to say the reasoning makes no sense to me. I have read on the thread where researchers at top universities will not even look at the research because it has no validity yet people on this forum "know better" because of their one on one conversation with Dr. Dake. MS is an autoimmune disease(declared so by 95%-99% of researchers that know a hell of a lot more then we do). Before rushing to Stanford stop and talk to your neuro (even the ones at top facilities like Hopkins) and see what they think about this surgery. New members, please research this crap before you move forward and listen to the experts. I have had MS for years and have heard people claim they know more then the front line researchers and usually they are dead wrong!

Signed,

show me proof before trying to convince others(have seen NONE),


Scorpion
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I agree

Postby lyndacarol » Sun Jul 19, 2009 8:12 pm

In general, I agree with the spirit of Scorpion's post. But I will use different words to express it: Be cautious. The cause of MS is not KNOWN -- we have only hypotheses, educated guesses on what is actually happening in this disease.
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Postby LR1234 » Mon Jul 20, 2009 1:09 am

I understand where Scorpion is coming from but I think to rule out something that is present in almost 100% of MS patients and is not seen in the controls is rather premature.

Some of the dr's I have met are skeptical but if you have read the Zamboni papers you will see they are STATISTICALLY SIGNIFICANT and the way the study has been conducted fits all the criteria to be taken seriously. Its the ignorant dr's who ignore such studies.

These aren't student dr's just coming up with some ideas for kicks. These are some of the most respected top Professors in the world.

No-one is claiming that CCSVI is the cure for MS but what people are suggesting at this point is if you are found to have occluded veins maybe opening them up to return blood flow back to normal may at the very least help with symptom relief and however small that sounds, for some this alone would be a major breakthrough.

If it helps prevent progression and arrest MS then even better but no-one at this point can claim that it does as its too early to tell.
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Re: must speak up

Postby LR1234 » Mon Jul 20, 2009 3:40 am

[quote="scorpion"]MS is an autoimmune disease(declared so by 95%-99% of researchers that know a hell of a lot more then we do).

I am not sure where you got that statistic from!!!

There may be an autoimmune element to MS but after 40 years if it was purely an autoimmune disease we would understand more about it and have more effective treatments.

Primary progressive MS and secondary progressive MS do not in general respond to immune modulating therapies so that must suggest that something else is going on.

Maybe the autoimmune element is a result rather than the cause or
maybe CCSVI is the result rather than the cause.

If we look and treat MS from these 2 angles maybe we will have more success in preventing the progression.
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Postby peekaboo » Mon Jul 20, 2009 6:31 am

There is no one trying to "convert" anyone to any type of treatment. We are adults and we make our own decisions. There are all sorts of info on TIMS regarding all sorts of therapies and results from those who have tried them. Again this is personal choice. And that is why CCSVI recieved its own forum so it would not cloud any other forum.

Scorp I am sorry you feel so angry...MS sucks and its very frustrating. I personally who has PPMS ( and wheelchair bound) have chosen this type of intervention not only because it made sense to me but also there is very little else out there that I felt safe and immediate. I did hvae CCSVI problems and if at worst if it does not stop the progression of MS in my body I would hate to think of the consequences of a closed jug or azygous vein.

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Re: must speak up

Postby HarryZ » Mon Jul 20, 2009 7:03 am

MS is an autoimmune disease(declared so by 95%-99% of researchers that know a hell of a lot more then we do).


I'm going to respectfully disagree with that statement because after some 60 years of research, there hasn't been one MS researcher on earth that has been able to prove that MS is solely an auto-immune disease. While the immune system does appear to become involuntarily involved with MS, nobody knows if it does so as the "cause" of MS as opposed to a "reaction" to MS.

Like another post in this thread stated, if MS were indeed an auto-immune disease, you would have thought that after all these years, a far better understanding and better treatment process would have been discovered.

I suggest you read the article in this link. Perhaps it may change your ideas about this lousy disease.


http://jrsm.rsmjournals.com/cgi/content/full/98/7/303

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Postby cheerleader » Mon Jul 20, 2009 7:04 am

Scorpion-
You're entitled to your opinion.
Here are the facts . My husband had a 99% occlusion (that's almost a complete closing) of his left jugular vein and an 80% closing of his right. We saw it on the MRV. His blood flow was refluxing back into his brain and creating hypoperfusion. Any vascular doctor will tell you that is bad for the brain. Ask them, don't take my word for it. 100% of MS patients show stenosis (a narrowing or occlusion) of their jugular or azygos veins, creating reflux and perfusion in the spine or brain.

You do not need to be tested, you do not need to read our posts. You have every right to ignore this.

But I have every right to tell you that the evidence of CCSVI in MS is growing daily...and that will happen whether or not we like this particular scientific paradigm.

I'm not sure why you are so offended by this, but that is your right as well.

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby patientx » Mon Jul 20, 2009 7:28 am

cheerleader wrote:Here are the facts .... 100% of MS patients show stenosis (a narrowing or occlusion) of their jugular or azygos veins, creating reflux and perfusion in the spine or brain.


Not exactly true:

http://www.thisisms.com/ftopict-7626.html
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Postby cheerleader » Mon Jul 20, 2009 7:41 am

Thanks for clarifying, patientx. You are correct.
IG (the one MS patient in question without CCSVI-out of a couple hundred) is now looking into differential diagnoses. Make sure to read the entire thread for further info-

That's the terrific thing about being tested for CCSVI...you either have it, or you don't. But you won't know until you're tested. And posting doesn't change stenosis.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby questor » Mon Jul 20, 2009 8:22 am

Scorpion,
I look at CCSVI as being a newly identified and treatable condition, the treatment of which can improve brain and body health by improving the characteristics of blood flow around the brain and spinal column. Given the fact that this condition has been shown to be closely associated with multiple sclerosis, I anxiously await the chance to be examined and treated for CCSVI.

I take several medications prescribed by a neurologist for MS. Assuming I am lucky enough to become one of those diagnosed and treated for CCSVI by a doctor of vascular medicine, I don't plan to stop taking those MS medications, or to consider myself cured of MS. But, if CCSVI treatment leads to a reduction in heat sensitivity, body fatigue, poor mental stamina, lower body weakness, impotence, migraines, numbness, gait instability, poor vision, nystagmus, and bladder problems, so much the better.

--Tracy

EDIT: wording changes
Last edited by questor on Mon Jul 20, 2009 11:38 am, edited 4 times in total.
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Postby patientx » Mon Jul 20, 2009 8:34 am

cheerleader wrote:Thanks for clarifying, patientx. You are correct.
IG (the one MS patient in question without CCSVI-out of a couple hundred) is now looking into differential diagnoses. Make sure to read the entire thread for further info-


I did read the entire thread. I believe the gist is that because this person didn't have stenosis, she probably doesn't have MS.

And posting doesn't change stenosis.


I'm not sure what this means.
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Postby peekaboo » Mon Jul 20, 2009 10:06 am

Turkertd wrote-
Assuming I am lucky enough to become one of those diagnosed and treated for CCSVI by a vascular surgeon, I don't plan to stop taking those medications, or to consider myself cured of MS


Are you pursuing CCSVI testing?
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Postby questor » Mon Jul 20, 2009 10:27 am

peekaboo wrote:Are you pursuing CCSVI testing?


I contacted Dr. Dake's scheduling assistant last week, and sent in a packet of background medical info by mail to start the ball rolling.

I'm now hopefully awaiting a phone consultation.

I live less than an hour away from the Stanford Medical Center. This was an opportunity I didn't want to miss.

--Tracy
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Postby peekaboo » Mon Jul 20, 2009 10:37 am

My sister lives in sunnyvale :)
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Postby whyRwehere » Mon Jul 20, 2009 11:10 am

man Scorpion, hold the venom. As the wife of an MSer, I can say, just as an observer, that this "theory" makes so much sense. Please read the whole thread again, so that you can better understand. No one says you have to believe, but telling people to stop supporting something that FINALLY makes sense and is making a difference, is a losing battle.
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