This Is MS Multiple Sclerosis Community: Knowledge & Support

We'll all pitch in and get you a hidden satellite uplink transmitter. Don't worry, they all wear hats with antennae on them!

We have moles but they are all out in the open!! One week and counting tick tock tick tock... Good job Sharon, cannot WAIT to hear it all....

Mark

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RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

I just received an email from NYU - they will not allow me to audio/video record the lecture of Dr. Zamboni. I believe the MS Center at NYU has been overwhelmed and they are trying to keep the event under control. Originally, the meeting was going to be for a small number of people with breakfast being served. The meeting has now been changed from a small meeting room to an auditorium and NO breakfast! I had been approved by NYU to do the recording -- we were waiting for Zamboni to approve --- who knows what happened in between??!! Oh, well -- I still have my invite and I will take paper and pencil. ( hope I can write as fast as Joan)

Sharon

that is stupid. i say, candid camera time LOL jk

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Maybe you could wear your Inspector Gadget trenchcoat and bring your top secret video recorder cleverly disguised as a lipstick!

That is strange, but it's also exciting to see all the interest.

Pam

Sharon,

.. and what about using a small voice recorder, than at home typing the text, and then deleting the recorded audio... i think there is no problem with that

and you are my guest for a beer
or milk

That's ridiculous...this isn't top secret info., for pete's sake!! Hey, the fact that they let you go is amazing... so we'll be glad with whatever you bring back.. Thank you for taking the time, Sharon and good luck.

We are living history here...

I’d like to have this as much as anyone, but I would have been quite surprised if they *had* let this be tapes. It's not keeping it secret - take notes and pass them along! But you want to let people feel they can speak freely, and you don't want to abridge the intellectual property of either the speakers or those who have arranged to have them speak.

Just as there's a difference between wanting to tell people you've been seeing encouraging results - even very encouraging results! - and saying those results are ready for publication in some peer-reviewed journal.

I spent some years working at a measly community college and even there no instructor or guest speaker ever welcomed having their lectures, seminars, panels, etc., being taped by some third party.

Who wants to have a bad hair day recorded for eternity?

-d

NYU was not expecting the response they are getting....they are overwhelmed. I am disappointed that I will not be able to bring back a video, but in the big picture, what is important is Dr. Zamboni will be interacting and talking with more doctors. Instead of 25 or so docs and clinicians, he will be speaking to an auditorium filled with the medical guys and gals. NYU may decide to do their own recording -- I will check this out.

Thanks to everyone for your support and encouragement. This is going to be an adventure!

Sharon

**Dunkempt --- I am in agreement with you. I was surprised when NYU first approved my recording the meeting. I will respect the policy of NYU...as CCSVI advocates we need to play by the established rules so that we will be welcomed not excluded.

Any news yet?

Hi All

Just back from my trip to NYC. The meeting/lecture was not recorded by any media outlet nor by NYU. Dr. Zamboni was interviewed directly after the meeting by the local ABC affiliate. Prior to the meeting, Zamboni met with folks from the NMSS.
Dr. Salvi (Zamboni's neurologist was also in attendance). There were approximately 75 people in attendance (normally the Myelin Resource Group meetings have 20 people in attendance). Dr. John Reichert, Executive Vice President of Research from the NMSS; Dr. Jack Burks, Medical Director of MSAA; Dr Levine, NYU- an EAE researcher; Dr. Joe Herbert, Director of MS Center at NYU were in attendance. Name tags were not given out and some people did not identify themselves when asking questions .
The lecture covered much of the same information we have discussed at length here on TIMS. Zamboni had his presentation slides showing the relux of blood, the variances in pressure gradients, the cell damage caused by iron deposition, etc. -- really not any new information for us here on TIMS. But, for the audience, this was new information. The audience were neurological students, clinicians and doctors -- they do not study the vascular system. Zamboni repeated in his lecture, the neurologists and the vascular doctors need to learn from each other -- they need to study CCSVI together. There is an obvious disconnect between the two medical disciplines. Questions from the audience were neurological; Zamboni answered from a vascular perspective - I think this was frustrating to some. Dr. Joe Herbert said. “We need to rethink old prejudices”. With that in mind, the NYU center will be holding a weekend meeting for neurologists to learn and discuss CCSVI.
The Question and Answer period was very interesting as many are learning about flow of blood from the brain (or not from the brain) ; how blood reflux damages the cells, etc. The following are not exact quotes and I have summarized what Zamboni answered. Here are a few things I do not believe we have discussed on TIMS :

Q: How do you explain optic neuritis?
A: The blood from the skull is trying to escape – it goes to the orbit (eye)

Q: In your talk, you (Zamboni) said that EAE does not create the large vein malformations shown to be found in patients with MS. This may be true, but EAE does show similar small blood vessels as the MS patient. How do you explain this?
A: The autoimmune response in EAE does not start the process of vein malfunction; it cannot create a malformed vein. (Zamboni did not address the small blood vessels)

Q: Where do you draw the line between research results and testing and treating the MS population?
A: We need to have collaboration between the medical disciplines before going to the MS population. CCSVI should be considered as an additional therapy.

There were other questions from the floor, but I would be repeating information which has been discussed in Zamboni’s papers and here on TIMS

Zamboni mentioned there will be a new paper coming out on SWI and iron deposition
I was able to speak with Dr. Zamboni for about 10 minutes. He is very soft spoken—seems to be a gentle person. I thanked him for his dedication to MS, to his wife, and to his research. He thanked me and said I had given him a “gift”. We talked about my procedure at Stanford and also my daughter’s. Dr. Salvi asked me twice how I was feeling –“you feel good ?” Dr. Salvi has that “mad scientist” kind of look. I also spoke with Dr. Herbert from NYU – he is going to be following up with educational meetings for neurologists on CCSVI.

I spent quite some time with Dr. Jack Burks and I learned a great deal about the scientific process that is going to take place before CCSVI becomes a mainstream treatment. He understood my frustration, but then he reminded me about Tysabri being placed on the market early. On the positive side, we have more doctors today who know about CCSVI than we did five days ago – these are the doctors who went to Hamilton and to NYU. I am looking forward to viewing the video of the Hamilton discussion –

All in all an interesting and educational trip and I got to have lunch and enjoy a long chat with “bestadmom”. Gee, once we started talking it was like we had known each other for a long time and we just had a lot to catch up on. You TIMS members in the East are lucky to have her as a patient advocate. She is doing amazing work to further the cause of CCSVI.

Sharon

That is great stuff, Sharon. You must have been taking notes - I could have never remembered all that.

Thanks for updating us and for all the information.

Jill

Thanks Sharon for your excellent summation of the NY meeting.

Yes, we are fortunate to have "bestadmom" working for CCSVI in the east!

Unfortunately, I don't think that the Hamilton Conference was recorded. Dr Haake put his presentation on his site - I believe.

Thank you Sharon!

I'm glad they are including a few MS patients in the conferences too. You are a great liaison for us to the medical community.

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RRMS '96 SPMS '02 | Dual jugular vein stenosis (CCSVI) | 10/09 3 stents, 1 angioplasty. Details http://healingpowernow.com

Am I right that optic neuritis is more common early in the m.s. process and less common later? That it "burns out" and ceases to be a problem for some? Is this because of the widening of the ventricular area in the brain, as m.s/ccsvi progresses, so then there is a place for the backwashed blood to go?

It sounds like a fascinating talk and I'm glad you were there to represent.

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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

Cece wrote: Am I right that optic neuritis is more common early in the m.s. process and less common later? That it "burns out" and ceases to be a problem for some? Is this because of the widening of the ventricular area in the brain, as m.s/ccsvi progresses, so then there is a place for the backwashed blood to go?

Wow, what a good point! Optic neuritis was my first symptom 8 years ago. It cleared up and nothing odd with my eyes again (except when super tired) until very minor car accident, someone bumped the back right of my van, me as driver and through me into double vision - the neuro and the opthamologist both argued about what caused the double vision and in the end neither would say what it was. CCSVI and your above point ventricular areas explains why neither doc could make a definitive dx. I am thinking now, the bump shifted one of my large veins, which in turn reflux-flushed an optic area causing opt neuri? Thanks so much!