This Is MS Multiple Sclerosis Knowledge & Support Community

Hi everyone,

A coffee friend of mine is the wife of George Johnson, a well known and respected member of the scientific community. He is on Wikipedia !!!!! A link to his Wikipedia page :


http://en.wikipedia.org/wiki/George_B._Johnson

I have been emailing him all the scientific and awesome stories about CCSVI and he is VERY interested. He is also a science writer and assured me that he would write a column on CCSVI probably in January. Right now he is under pressure getting the latest edition of his biology textbook completed.

Another small step for CCSVI !!!

ozark

This is the email I sent to the Johnsons last week :

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To : Barbara and George Johnson
Hi Barbara and George,
First, thank you Barbara for suggesting this and thank you George for giving this some attention. This just could be the answer to one of the major puzzles of Multiple Sclerosis. It has the promise of real relief from symptoms for many people with MS.
I have included links to much interesting information on CCSVI. Dr Paolo Zamboni is the hero of the story.
In addition to these links, just Google "CCSVI" and you will discover more than you want to know about this.
Please let me know if this is good fodder for an article in the St. Louis Beacon !!!!!!
Gratefully,
Jill Nolan
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A good place to start :
News Release - Neurologists Investigate Possible New Underlying Cause of MS http://www.buffalo.edu/news/10562

This next link is to the MRI imaging lab in Detroit where I am going on December 7 for my brain scans and 3D imaging of my venous system in my brain and neck areas. This is a pilot study. Some very good images of normal and stenosed veins.

http://www.ms-mri.com

informal notes from an educated layperson who attended Dr. Zamboni's "by invitation only" cenaculum in Bologna on September 8.

http://www.keepandshare.com/doc/view.ph ... 70985&da=y

The most important scientific paper to read
Dr. Zamboni, Italy - Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis http://jnnp.bmj.com/cgi/content/full/80/4/392

Some local St. Louis flavor, Stephen Brenner, MD is a neurologist at the St Louis University Med School.

About Dr. Steven Brenner, SLU http://neuroandpsych.slu.edu/index.php? ... nner-m-d-2

Steven Brenner, SLU - MS appears to be related to venous flow abnormality of the brain with secondary brain autoimmunity http://jnnp.bmj.com/cgi/eletters/80/4/392#4667

Dr Dake is the vascular surgeon performing stent surgery at Stanford to solve CCSVI problems in people with MS.
Dr. Dake - Medical Director, Cath/Angio Laboratories, Stanford University Medical Center, Stanford, CA http://med.stanford.edu/mcr/2008/dake-0618.html Dr. Dake is doing imaging and catheterization surgery on patients he observes with the CCSVI condition.
Posting on the This is MS forum listing people with MS who have been, or are scheduled to go, to Stanford for imaging and probably catheterization/stenting.
This is MS web Forum on CCSVI http://www.thisisms.com/ftopict-8368.html

Very nice! Another scientific spirit open to observe the evidence...

George's reply to ME !!!!!!

(I get a little worried about posting private emails here... I hope I don't get into trouble with any of these people)

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Jill

I have read with interest the article by Zamboni that you recommended. I am not a medical doctor, and so am in no position to evaluate his CCSVI, although I know a good deal about the more traditional explanations of the cause of MS and attempts to apply genetic engineering techniques to repair the damaged gene. But this is all very interesting, and I will look into it further with the idea of writing a Beacon ON SCIENCE column explaining what Zamboni is up to, once I understand it more fully. It is actually no small job for me to prepare a column in an area where I know little going into it, so it will be a bit of an effort to do a decent job. As Barb will tell you, I am facing a tough end-of-year deadline for my textbook revision, so I have no plan to delve into CCSVI until the turn of the year. Look for something in mid-January.

George

Excellent work Ozark!

Thanks so much for this message with all the information and links. I just sent a note to Joe and Terry Graedon at The People's Pharmacy. Maybe CCSVI will get some air time from them. Judi

Thank you so much for your effort Jill!! It means so much to all of us. Nice references

Hi everybody... Thanks for bumping up this thread. I've been pretty persistent here in St Louis both with the Hope Happens organization and with professors at the Washington University Medical School trying to get them interested in CCSVI. My sticky "Who are the BIG NAMES" was initiated by my conversation with the administrative director of the Hope Center for Neurological Disorders. I just received an email from him this morning !! I've also contacted an Interventional Radiologist who is a professor of medicine at Washington University. My trip to Dr Haacke in Detroit was postponed this morning, so everything for me is being delayed. The following are some links to St Louis organizations that I am working with :

The Hope Center for Neurological Disdorders :

http://hopecenter.wustl.edu/Pages/default.aspx

Hope Happens... fundraising nonprofit for the Hope Center

http://www.hopehappens.org/

My biology professor friend is just swamped with end-of-the-year editing on his textbooks, but he assured me he will look at CCSVI in January.

I'll keep you all posted on activity in St Louis !!

Hello from North Carolina: I have a facebook page CCSVI MS North Carolina. Joe Graedon from The People's Pharmacy emailed me back saying he did not know anyone in the area working on CCSVI
My plans are to 1) write an article about CCSVI for the local paper 2) contact congressman David Price who was given an award for his support of MS Research. I am going to my acupuncturist this a.m. with CCSVI info.

Thanks for this website and all you good people for keeping me motivated and sharing networking ideas. FYI I have an essay published in the anthology "Voices of Multiple Sclerosis" put out by LaChance Publishing and available on Amazon etc. Terry Garr also published an article in this collection. Hmm....maybe I should contact her about CCSVI?????