This Is MS Multiple Sclerosis Community: Knowledge & Support

nope, not that one

Thanks Cece and Curious, now it make more sense.Not having seen the article before I was lost and almost bought a collar at a pet store to use it for that purpose.

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Everybody here brings happiness, somebody by coming,others by leaving.  PPMS since 2000<br />

Count me in! I 'll be there, too!

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Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

not 100 % sure ..... but I think this conference is closed to the Public

You have to be invited ...... and be a medical Professional .

I would like to see some media presence ....... Accelerated Cure perhaps ?

This is what is needed - white coat talking to white coat .

I predicted long ago ...... that the WC 2 WC ...... is what is needed.

And now ..... the day has arrived.





Mr. Success

It's better than ISET. Although ISET was broad and reached more IRs unfamiliar with CCSVI. But the answers we need are going to come from these guys, digging deep.

thanks Nunzio - lots to think about

Will you really? How exciting. You'll report back?

interesting, thanks for sharing, Erika!
esta in my "cece's turn" thread said Iwas the North American Erika - I took that as a high compliment

you have been cracking wise lately

Oh, I did not plan to be... I do not even know how to name it.
I only wanted to start or maybe push something important. This is why I would do it again and again. I am not sorry for anything. It is not important how I feel (btw not very good). At least I can test the stent. It is still OK. I had venography in January.
I have been following whole your story North American Erika
European Erika

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Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

Sou, that's wonderful. You're attending as a medical student...maybe you can write up the "notes" and post them on TIMS like I did for Bologna in '09? That way we can all share in the excitement. I know we'd all appreciate that!
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Yeah, Sou, and if you could make a post about 5 mins after the mouse study presentation (excuse me, murine) that would work well for me.

if you brought a recording device and livestreamed it, sou, that would also be acceptable....

It sounds fabulous, I hope you have a good time and lots of learning.


I noticed this one, it might be about the question we all have: which veins, when obstructed, cause which sorts of disability. (Azygous=spinal lesions, bilateral jugular stenosis="Cerebral" MS?)

Dr. Zivadinov is definitely pulling away from the use of MRV for imaging CCSVI.

Dr. Galeotti is the only IR, having worked with Dr. Zamboni from the beginning of CCSVI, with the most years of experience in CCSVI.

Any society with Dr. Zamboni as president is a good society.

"neurovascular mechanisms" - I'd have to hear this one to know what exactly that means. This is mechanisms of action, so ways in which the brain can be affected by the vasculature?

Not much mention in the programme of diseases other than MS and CCSVI, but here's Alzheimer's, and I hope our guys solve that one too. No pressure.

This fits with research he was doing even before CCSVI came along. Interesting stuff.

A little over my head..."differentiation of oligodendrocytes"?

His study was IRB approved back in August, but I wouldn't expect him to have any results this soon?

this is CT scans of the vasculature, I'm not expecting much from that as an imaging method

I would be interested in this, though! I believe my MS has had a lot of hypoxia involved. 80% and 100% jugular blockages....

Glad that these are rare. Dr. Salvi is the neurologist who has worked with Dr. Zamboni from the beginning.

Do vascular disorders exhibit seasonality differences?

Like Dr. Zamboni, Dr. Shepherd is looking at the plethysmography neck-collar-to-measure-blood-flow.

This is interesting, the speakers are invited to submit their work for peer review/publication at Functional Neurology. Interesting that it's a neurology journal, not a vascular one. (We need an esteemed neurovascular journal, I don't think there is such a thing yet.) Functional Neurology is based in Italy, so as a European journal is it likely to be dismissed by US neurologists? Or by having anything positive to say about CCSVI, it is likely to be dismissed....

It was work to go through all of these, I skipped a bunch, what a fascinating program this looks like it will be.

It is more quantitative, I would hope. When I was in college, we studied the concept of Efficiency. For what you put in, how much do you get out? You can express that as output divided by input, which can be a percentage. So, one of our labs was to measure the actual energy you were getting out of a gallon of gas, and when you divide that by how much is in it (about 63 MJ but I don't know whose gallons) you get how efficient your car is at using gas. We had to check out how far the car would roll in neutral, as well as MPG on the flat. The answer was about 20% efficiency. The corollary of that is that you have to throw away 80% of what you buy at the pump, if you use internal combustion.

I didn't have a driver's license or a car, so I made my own version of this lab by measuring my work output on a bicycle ergometer (exercise bike with instrumentation) and my oxygen uptake using neoprene balloons and a gas analysis machine. It ended up about the same as a car. But my food tastes better.

Why this digression? We need exactly the same thing, except a measurement of our oxygen uptake above the neck, in terms of dissolved blood oxygen. The plethysmography approach may give a volumetric of output versus input (I would hope) but we also need to measure the uptake: how much oxygen was there in the blood that went up to the brain, and how much is left before it goes back to the lungs. Combine that with a knowledge of the volumetric output versus input and you know if your brain is going to have a problem with oxygen (hypoxia). Flow is important, but if all that is flowing is tap-water you can't get much thinking done. (especially if it's dripping )...

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Hi all, I don't get much time to come here and post these days but just thought I would put a note in about Prof Beggs who is going to do a presentation at the ISNVD meeting. He is a medical engineer and is working on a model that would enable researchers to 'see' what is happening in the brain with regards to circulation, hypertension and hypoxia... probably a lot more but as he only has 15 minutes to speak it will be a summary... He attended the Glasgow CCSVI conference and was very interesting if a little controversial, he does not endear himself to people. But you have to admire his ingenuity and lateral thinking.
I can't go to this... I hope someone here can and we get some feedback.
All the best
Michele

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Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.

Let me up this topic.

Except from me, is any other "thisisms'er" planning to attend the conference?

In my opinion, it is open to the public. The registration form did not ask for a copy of my diploma when registering. I don't know, though.

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Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

He's not a member of this forum (but by extension, he is) but Dr. Hewitt will be attending. He is with Pacific Interventionalists in Southern California.

Buon divertimento!

I will be there. Do my best to provide an update after the meeting.