CCSVI in Multiple Sclerosis: Running out of “Wait”

Stuart SchlossmanFor the Benefit of the Patient, MS Research Study and Reports, Multiple Sclerosis

This Facebook posting was sent to me today – January 18, 2010


This note is for patients who believe they have no more “wait and see” time left. If you have time and health to wait for more research to confirm CCSVI, this note is not for you.

This is what I did for my husband, and this is my best advice. Not everyone can get on a plane to fly to Poland. Most will need to find local help. You can do it.

Get a “team” together. This can be healthy spouses, siblings, children, friends. Assign them your case. You will work together to find a doctor to treat you.


Print out Dr, Zamboni’s research papers
.
http://jnnp.bmj.com/conten

WebSpecials/pdf/YMVA_4198_

Zamboni_final.pdf
Get together Dr. Mark Haacke’s protocol for MRV testing-
http://www.ms-mri.com/

Look for local “interventional radiologists”. Search for these doctors on the internet. They often practice in groups or at universities. If you cannot find any of these doctors in your area, search for vascular surgeons. IR docs use magnetic resonance venography and venography to find venous abnormalities. They do it every day. Vascular surgeons understand the importance of venous return.

Call these doctors, email these doctors, tell them you would like to be tested for internal jugular vein and azygos vein stenosis, and send them the Zamboni research. Tell them you have headache and swelling as sign of blocked veins. Mention that interventional radiologist Dr. Michael Dake at Stanford University is conducting a clinical trial on this, and he believes that Dr. Zamboni is right.

Do not stop. We have a group of patients on the east coast of the US that spent months contacting hundreds of interventional radiologists. They found one willing to look at this, and now there are finally more coming on board. Once these doctors see the glaring evidence of venous malformation in MS patients, they are convinced it is real. Then they talk with their IR doc colleagues, and the word spreads.

When I went to Stanford last year, no one was talking about CCSVI. But slowly, the interventional radiology doctors are learning about this condition. Go to them with your team. Convince them to test you, to be a part of medical history. (You may have to offer to pay for your initial testing…but insurance will cover it once stenosis is proven. This is what we did.) Do it today.




Leave your comments here on this blog or visit this facebook page to leave your comment at the original posting

Thank you
######################

Keep Informed with News and Information regarding Multiple Sclerosis. If not yet receiving the “Stu’s Views and MS Related News”, weekly M.S. e-newsletter, then please take 20 seconds to register at: https://www.msviewsandnews.org . – Thank you
.
Have something to share with others? If so, please use the post comment link found below. Your name and email address would be appreciated but is not necessary unless you want a response from others. Thank You
============================================

Visit our MS Learning Channel on YouTube: http://www.youtube.com/msviewsandnews