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, April 13, 2010

Cognitive Dissonance and Credo

April 13, 2010 at 9:06am

My dear friend Marie, who has secondary progressive MS and was the second person treated at Stanford for venous malformations, taught me a very important concept when we started this journey together. 
"Joan, CCSVI and the vascular connection to MS will be tough for neurologists to accept. They will have cognitive dissonance."

As a musician, dissonance is something I know about. Hit two adjacent notes on the piano, and you get a dissonance. They "rub" each other. Move your fingers apart, to play a major third, and the ear is happier. You get consonance, resolution, or harmony.

Cognitive dissonance is when two opposing ideas rub in your brain at the same time, just like those notes.  This causes discomfort, so we humans try to avoid thinking about these things.
Some practical examples-
I know smoking is bad for me, but I'm addicted and need this cigarette.
The person I voted for is doing some pretty terrible stuff, but I picked them, so I have to keep supporting them.
I know this burger and fries aren't great for my health, but they are delicious, so the hell with it.
Yeah, that player may have beaten up his wife, but my team is having a great season, so I'll cheer for him.

The brain needs one of these ideas to win over the other, since both realities co-existing is painful.

Having a teenager in our house makes us deal with cognitive dissonance every single day.
"Mom, I know you tell me God is a loving creator, but why does He allow so much pain and suffering? What about Haiti???  What about Syria?  Does God will that?

Because Jeff and I are Christian, we point our son to the New Testament, where we learn that Jesus came, not as a wealthy and powerful king, but as a poor, suffering servant. He taught us to take care of others first, before pursuing our personal happiness, and that pain is a natural part of life, but it is never in vain.  If we were Jewish, we would point him to the Torah, and teach him that life is full of suffering, but we respond by caring for others, following the law, and worshipping our Creator. If we were Buddhist, we'd teach him about detachment from earthly cares and the path to enlightenment. Muslim; we would point to the Qur'an and how the Prophet came to teach us to care for others and worship Allah. If we were atheists, we'd agree with him; how could a loving God let so many people suffer? Religion (or the lack of) can often provide a solution to the cognitive dissonance of life. So can philosophy, so can therapy, so can nature.

I mention religion, because right now in Toronto, a medical establishment has gathered to profess their group "credo", which simply means "I believe."  These neurologists believe in the theory proposed in the 1940s by Dr. Rivers: that MS is an autoimmune disease best modeled in mice by EAE. All of the medications and therapies they offer are based on this credo. All of the lectures they attend, all of the textbooks and research written, all of the speakers, and all of the fine meals are financed by this credo.

And now here come a bunch of outsiders asking that they open up their minds to another viewpoint. MS could be caused by a malformation in the venous system--as evidenced by reflux of blood and stenosis in most MS patients. Cognitive dissonance is the result. How can their theory stand up to a completely new model? These two thoughts cannot co-exist in the mind, so one must be annihiliated. Guess which one they are going to kill?

In the beginning of all of this, I had hoped that the neurologists would be thrilled to investigate a new model of MS...afterall, they are healers, and surely they want to look into any theories of the potential causation of MS, right? But in talking with Dr. Schelling, I learned from history. Nothing has really changed in thirty years, except everything has changed.

We now have each other thru the internet, and the potential to take this research (which is compounding evidence daily) to vascular doctors and interventional radiologists. They do not have any conflicting views, no cognitive dissonance for them. They are willing to test this new theory, because it makes sense to them. They see how neurovascular diseases work everyday. They understand the importance of venous return. We have consonance. Harmony.

I've included a recording to listen to....I love ancient music, because the idea of dissonance transforming into harmony is so beautifully illustrated in this era. Gesualdo was considered "crazy" in his time, because of the dissonances he used in his compositions. Listen to how the rough, unexpected notes, rubbing against each other, give way to consonance and resolution.

Remember cognitive dissonance when you try to explain CCSVI to your neurologist. Feel compassion for them.  This is going to be a very difficult concept to consider. Try to find a doctor who understands what you are looking for. If your neurologist is open minded enough to accept the rub of dissonance--you are a lucky individual!


Friday, April 9, 2010

CCSVI Facts--

April 9, 2010 at 2:21pm

1. Dr. Paolo Zamboni found a new medical condition when he noted that MS patients have stenotic veins draining the brain and spine. Through his blinded research, he found a condition he called Chronic Cerebrospinal Venous Insufficiency. It was new technology--doppler ultrasound--that showed him the blood was refluxing and slowed in MS patients brains. Although the connection of MS to the venous system has been made for over 100 years, Dr. Zamboni was the first to see a direct correlation. Many doctors around the world have now confirmed what he saw.

2. We know about Chronic Venous Insufficiency in other parts of the body. This is a recognized condition. Vascular doctors have studied this and treated it with angioplasty for many years. Surprisingly, the jugular and azygos veins had never been studied in depth before. Vascular doctors have studied the veins draining the legs, kidneys, liver and heart, yet not the brain. This is why CCSVI is new; however treating veins is not new. When veins do not work, there is harm to the organ they are supposed to drain.

3. The autoimmune theory for MS is a theory. It has never been proven. Dr. Thomas Rivers created EAE in the 1930s, when he discovered that he could mimic the demyelinating lesions seen in the MS brain. He created these CNS lesions by injecting rhesus monkeys brains with rabbit brain extract. He called this experimental allergic encephalomyelitis--EAE. (now the "a" is for autoimmune.)

We have never- in all of these years of research-- found out exactly why the immune system is activated in MS. Dr. Zamboni's research provides a very plausible reason: slowed venous drainage and reflux causes a break in the blood brain barrier which leads to deposition of foreign particles (including iron) which activates the immune system. He undeerstands this, because this is exactly what happens in venous stasis ulcers formed on the legs in Chronic Venous Disease.

4. People do not like new ideas, especially when they counter the status quo.

5. Doctors do not like patients reading on the internet and telling them what to do.

6. Time is brain...this expression is used for stroke treatment, but is applicable for MS, as well.

7. If MS is re-categorized as a venous disease with neurological complications, many people who make their living treating MS will be affected--researchers, professors, doctors, pharmaceutical reps and CEOS, nurses, and neurologists. Not all of them are happy about this. Many want this to just "go away."

8. Vascular doctors understand the importance of venous return....but not all want to or are able to treat CCSVI.

9. A knowledgeable, informed patient or caregiver is an asset to any doctor. But see #5. We need to read the research and understand the facts. 
Speak softly and carry a large stack of research papers.