This Is MS Multiple Sclerosis Community: Knowledge & Support

I understand that the Dr. cannot treat all MS patients using liberation therapy for CCSVI. But if I had symptoms (e.g. fuzzy mentation) that we wanted to rule out vascular problems in the brain, and when the tests were done it turned out there was a vascular problem (to wit CCSVI and reflux) that could be treated with balloon angioplasty to the narrowed veins, what is the problem? No "cohort" of "all MS patients is being treated. Just Mr. Jones complaining of fuzzy mentation.

helen

i am sure that they will be great images
i think color doppler, the cheap no radiation way of screening, is just fine and cheapest too.
the catheter needs to be used to really find what ails you

Worrisome!

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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

Does Mr. Jones have MS?

If not, no problem.
If yes, he's part of the cohort....

This is where all the talk of discrimination in Canada comes from. No one with MS is allowed to get this, but someone without MS can waltz right in and, if there's stenosis in their jugulars, they'll fix it.

At least that's my take on it....

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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

Nothing's impossible I have found, When my chin is on the ground,
I pick myself up, dust myself off, start all over again.
Don't lose your confidence if you slip, be grateful for a pleasant trip,
And pick yourself up, dust yourself off, start all over again.
Work like a soul inspired, till the battle of the day is won
You may be sick and tired, but to be a man, my son.
Will you remember the famous men, who had to fall to rise again
So Take a Deep Breath, Pick Yourself Up, Dust Yourself Off, Start All Over Again...

1936
dorothy fields wrote the lyrics
jerome kerr wrote the music

but my first encounter was actually peter tosh too.
my first intro to reggae

he was really on point

“You can fool some people sometimes, but you can’t fool all the people all the time– …….so now we see the light, we gonna stand up for our rights”

from “Get Up Stand up”
Peter Tosh-first sang it while in the group called The Wailers with bob marley

he also sang

Legalize it

and

Equal Rights



thats what you keep saying

never in my career have i done venography for someone who has fuzzy mentation. That is not the standard of care. It might be some day but not yet.

the indication to test is MS, to do venogram is MS.

that is the problem

Dr. S ...

If someone had a problem with their leg, couldn't you do a venogram for MayThurner ... and then explore a few other veins?

Got it.

I guess there really isn't anything right now that leads a dr. to do the venograms that show CCSVI except MS. I seem to reacall Dr. Zambozi stumbled across it when he notices some anomoly that suggested reflux, so he investigated further and uncovered CCSVI. In the U.S. system, if you noticed something that suggeted a fertile path for investigation, how far would you be allowed to explore without IRB approval? (I am not looking for some kind of end run, that is just a legitimate curiosity question.)

should all patients with fuzzy mentation get color doppler exams?
what is the evidence?

depends upon what the problem was.
but there is no association between may thurner and ccsvi that i know

I am no lawyer so do not quote me. But perhaps if you thought you could do a patient some good (and there is evidence to that effect, and you didnt do any harm (and there is some evidence to that) , you could, until the theory was disproved, do the treatment in your own treatment facility. but if you did not control the operation, then then facility could decline to allow it done on its location. if you are doing research and not treating individually on patients, then you have to have IRB oversite within an institution.

How about this: would it possibly be worthwhile to do a retrospective study, giving a brain MRI to people who have had a jugular vein removed due to cancer, compared to people who'd had similar cancer but did not have a jugular vein removed...and it would have to be on people who had this done thirty years ago? It would be to look for MS lesions in the brains of people who have had one or both jugulars removed. The hard part would be finding such subjects but giving and interpreting the MRI would be easy. And it keeps being said that people can have a jugular removed and 'be fine'.

I don't know, I want this proven, and it's taking very looooong.
Not to mention our favorite #1 researcher had his proposal turned down.

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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

Hi Cece,

I thought doctor Sclafani's statement above meant that the sleeping giant of insurance companies might soon figure out that paying for CCSVI treatments could save them big money in the long run, so they might soon start covering it, but maybe I've got that wrong. Sigh...

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DX 6-09 RRMS

More likely that they will figure out a way to not pay, call it research... They have a tendency to look for reasons not to pay, instead of looking at the upside...

and the more the insurance topic is discussed the sooner they will address it. So maybe this is a subject better left alone for the time being.