Welcome! This blog contains research, information on lifestyle, nutrition, dietary supplements and health for those with MS, as well as continuing information on the understanding of CCSVI and cerebral hypoperfusion. This blog is informative only--all medical decisions should be discussed with your own physicians.

The posts are searchable---simply type in your topic of interest in the search box at the top left.

Almost all of MS research is initiated and funded by pharmaceutical companies. This maintains the EAE mouse model and the immune paradigm of MS, and continues the 15 billion dollar a year MS treatment industry. But as we learn more about slowed blood flow, gray matter atrophy, and environmental links to MS progression and disability--all things the current drugs do not address--we're discovering more about how to help those with MS.

To learn how this journey began, read my first post from August, 2009. Be well! Joan

Tuesday, October 19, 2010


Two new papers from Dr. Chung

October 19, 2010 at 8:11am

For those who have been following this page for a bit, you may remember my references to Dr. Chung in Taiwan who has been studying the jugular veins in relationship to transient global amnesia (TGA) and other neurological disorders.  

Dr. Chung found that in those with internal jugular vein valve problems, or valves that didn't close properly,  there was reflux of blood in their jugulars when they used a "valsalva maneuver"--that means pushing air up against a closed airway, or straining.  The valves opened and this sent blood back up into the brain, and created temporary ischemic (low oxygen) events.  Dr. Chung postulated this is what causes temporary amnesia.   Some activities that create valsalva manuever are coughing, straining, opening up plugged up ears, lifting, and stressful responses. 

Dr. Chung has two new papers out on aging and the jugular veins.  I thought these were important to discuss after the ECTRIMS conference-- in which a researcher from the American University in Beirut stated that CCSVI could not be important in MS, because he only found CCSVI in older or more progressed MS patients.  He and his team found CCSVI in 92% of what he called "late MS" patients---those who had MS 10 years or more.  To anyone who knows MS, 10 years is not "late MS." 

I know many people who have had MS 30 years and more, but let's get on with what Dr. Chung discovered.  Dr. Chung is now measuring venous return in the jugular veins of the "healthy"  elderly.

Wednesday, October 6, 2010

Snake oil?

October 6, 2010 at 8:33am

We're seeing many neurologists and MS specialists responding to CCSVI research reflexively.  The common attack is
"This CCSVI angioplasty is no different than bee stings!  It is simply snake oil."

I think it's important for patients and caregivers to understand history when trying to respond to this claim.  You know me and history (Rindfliesch, Putnam, Swank)  I LOVE history.

The term snake oil comes from the late 19th and early 20th century in the US, when you could actually purchase real snake oil to help your health.  Snake oil was claimed to have many healing properties and was sold by traveling salesmen, who put on shows with feverish sales pitches, hysterical claims, and miraculous healings which rivaled religious revival meetings.  But these products didn't really do much for one's health, and soon the public caught on to the quackery and the term snake oil became associated with false medical claims.

When Dr. Zamboni discovered Chronic Cerebrospinal Venous Insufficiency (CCSVI)  he actually discovered a new disease.  
Other international researchers, like Dr. Chung in Taiwan, were noting how internal jugular vein valve incompetence (IJVVI) affected by valsalva manuevers was related to transient global amnesia and hypoxic events.   Dr. Zamboni, while utilizing ultrasound equipment and scanning the neck of an MS patient-- noted venous reflux.  Something that was not normal, and had not been detected before--reflux in the absence of valsalva, independent of body position.   He spent the next five years conducting blinded doppler studies, writing research, bringing other doctors on board and learning all he could about this disease mechanism. He tried to address the truncular venous malformations he found in MS patients' veins with angioplasty.  It helped his patients.  And then he published his research, and I read it--along with patients, caretakers and doctors around the globe.

Venoplasty to relieve CCSVI is not a product.  It is not sold as a cure.  
It is not quackery.  Angioplasty is used to relieve venous congestion and stenosis in many known diseases, including Budd-Chiari, heart disease, kidney disease, and jugular insufficiency in dialysis patients. Sometimes, the organ with venous congestion is too damaged to have much healing after venoplasty (as in Budd Chiari, when a liver transplant is necessary.)  But, if caught early, treated venous malformations can lead to symptom relief and stop disease progression in the affected organ.