Welcome! This blog contains research & information on lifestyle, nutrition and health for those with MS, as well as continuing information on the understanding of the endothelium and heart-brain connection. 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 auto-immune paradigm of MS, and continues the 20 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.

Thursday, September 30, 2010

To sleep, perchance to oxygenate


September 30, 2010 at 9:12am

One of the most profound, although seemingly minor, changes for my husband, now 18 months since his venoplasty for jugular and dural sinus stenosis--has been the return of dreaming.  After his procedure, he would wake up in the morning and recount for me his vivid dream from the night before.  It was so strange to us...he realized that for several years, he couldn't remember his dreams. 

He was now sleeping soundly, no longer spasming or waking up gasping for air.  And in this deep sleep, his dreams had returned. 

When I went to the CCSVI international symposium in Bologna last year, Dr. Salvi got up and spoke about the changes in his patients after angioplasty.  And one of the global differences his patients noted was deeper, more restful sleep, and the return of dreams.  He had a wonderful illustration that came on the screen during his power-point-- a cartoon of a person deeply sleeping, smiling, with a colorful dream bubble over their head.  I almost leapt out of my seat.  "That's happened to Jeff!"  I whisper/exclaimed to Dr. Dake, seated on my left.  "He's dreaming again."
Now, I read time and time again from patients and their caregivers about the return of deep, restful sleep and dreaming.  I realize that dreaming might not seem important in the grand scheme of recovery from MS....but I believe it is.  I believe it is proof of a brain that is healing.  A brain that does not have REM (rapid eye movement) sleep, does not dream.   There is research that links dreams, REM sleep and oxygenation.

"REM sleep time is strongly reduced by hypoxic and increased by hyperoxic atmosphere, in accordance with the existence of an O2 diffusion limitation. Any pathological decrease in arterial PO2 and/or O2 delivery creates a specific risk in REM sleep."

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During REM sleep, there is an increase in blood flow to the limbic system and the brain stem, with circulation to these structures decreasing during non-REM sleep.  As brain activity increases during REM sleep, the cerebral requirements for glucose and oxygen both increase....
Fundamentals of Sleep Technology--Butkov, Lee-Choing  2007

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