Multiple Sclerosis is a Spectrum Disorder

Dr. Gayatri Devi is a neurologist at Lenox Hill Hospital in NYC.  She has recently published a book called "The Spectrum of Hope: An Optomistic and New Approach to Alzheimer's Disease and other Dementias."

Dr. Devi is redefining Alzheimer's as a spectrum disorder, meaning that this diagnosis is not the same for every patient, that each patient will have a unique experience, and that there is much which can be done to empower the individual patient to reclaim their health.  A diagnosis of Alzheimer's is not "one size fits all."  And she attacks the biggest myth---that all people with an Alzheimer's diagnosis will end up incompetent in a nursing home.  She says this simply isn't true.

In this new book, Dr. Devi outlines ways to treat and arrest Alzheimer's progression through nutrition, exercise, lifestyle and medication.   She asserts that 60% of all Alzheimer's cases are preventable, and that science has shown that less than 5% of Alzheimer's cases are genetic.   link

I like Dr. Devi.  A lot.  She is positive, informed and uses real data and science to back up her claims. She has worked with Alzheimer's patients for 23 years, and she wants to dispel the myths about the disease.

Dr. Stuart Zola of Emory University has been making the same case.  He has been advocating for a spectrum disorder classification for Alzheimer's Disease and has specific recommendations for treatment.
link

His most important lifestyle interventions are the exact same as Dr. Devi's.
1. Heart Healthy Diet
2. Stress Reduction
3. Exercise
4. Sleep
5. Cognitive training--use it, or lose it.

Does this list look familiar to anyone else?  

I would submit that the exact same case could be made for Multiple Sclerosis.
MS is a neurodegenerative disease which is not genetic.  MS is a vastly different disease in individuals.  MS also occurs more commonly in women.   MS progression can be halted.  MS is a spectrum disorder.

Then why aren't MS neurologists using this same language in discussing treatment and lifestyle intervention with their patients?

The difference is that MS has a $20 billion dollar a year drug industry attached to the diagnosis.  And it is important for MS specialists to maintain the narrative that MS is a destructive, incurable autoimmune disease which must be attacked at the very beginning with immune modulating drugs.  No matter the disease presentation, the age of the patient, the level of neurologic damage---the narrative has been that ONLY drug intervention can arrest the MS disease process.  And this narrative has been pushed and publicized by MS Societies, MS advocacy groups, MS blogs, MS groups (which are sponsored by pharma) and in the press.  There's a lot of money wrapped up in telling this story.

Watch this Canadian news story from 1989, almost 30 years ago.   It will take you 18 minutes, but I believe it is important. The first half is about chemo treatment for MS, the second half is about nutrition.

Link to 5th Estate MS Story

Notice how the neurologists speak to the MS patient about his wheelchair prognosis "in two years" if he does nothing to treat his MS aggressively.   Jeff had a very similar prognosis. He was having trouble walking, was spending the day on the couch, exhausted.  Just like Ron, he was told to "do everything he could" to fight his MS.  But that "everything" only included drug therapy.  Listen to how Ron accepts the risks of cyclophosphamide (Cytoxan), a cancer treatment with very serious side effects,  which would eventually be shown to be ineffective as a monotherapy for MS. link

At 10 minutes in we meet another person with MS.  She has been part of Dr. Roy Swank's 35 year observational study of a low fat diet.  Dr. Swank's patients are still walking, working, living, remaining stable.  Dr. Swank gave his patients hope of disease reversal, of remaining mobile.   His program is simple.  Avoid fats from meat and dairy, eat mostly plants.  What we would call a "heart healthy diet."

The MS neurologist speaks for the medical profession, saying diet has "little to no role" in the care of MS patients.  And this is the position of the MS Society today---even though the science shows that the diet has made a difference.   Again, this was 30 years ago.  And it is still true---as the MS Society threatens to sue Matt Embry for speaking out about true MS Hope, and a program based on the Swank Diet.   link

We need to reframe the dialogue.  MS is a spectrum disorder.  It can be treated with lifestyle, nutrition, and exercise.   A healthy heart and vasculature can protect the brain.   Yes, MS will be different for every individual, medications may help some--and not all will recover.  But that does not negate the very real improvements made for many.

Push back against the pharma narrative.
Write your own story,

Joan

Columbia Researchers Provide New Insight into How the Brain Regulates Its Blood Flow

A group of multi-disciplinary researchers at Columbia University have made an exciting discovery.  They have witnessed how the vascular system regulates blood flow to the brain.
http://engineering.columbia.edu/columbia-engineers-provide-new-insight-how-brain-regulates-its-blood-flow 

The vascular endothelium maintains the lining of all 60,000 miles of our blood vessels, even the vessels inside the brain.  It is the largest secreting organ in the human body.  Neurological researchers had postulated that endothelial cells were not as important in maintaining blood flow inside the brain--that the brain itself was responsible for initiating cerebral blood flow according to neuronal health.  But this theory was wrong.

The brain relies on healthy blood vessels to maintain healthy cerebral blood flow.

The brain was thought to use a different mechanism--and this has lead neurological researchers to focus on the cells surrounding blood vessels in the brain.

According to researcher and professor of biomedical engineering, Elizabeth M.C. Hillman, this supposition has lead to incorrect ideas on brain health.

“Once we realized the importance of endothelial signaling in the regulation of blood flow in the brain,” Hillman adds, “we wondered whether overlooking the vascular endothelium might have led researchers to misinterpret their results.”

Dr. Hillman has spent the past 10 years using advanced medical technology, to study how blood flow is controlled in the brain.  Her research team was comprised of a multi-disciplinary members.  Other lab members who assisted with the study included PhD and MD/PhD students from Columbia Engineering, Neurobiology and Behavior, and Columbia University Medical Center. The group combined their engineering skills with their expertise in neuroscience, biology, and medicine to understand this new aspect of brain physiology.

To tease apart the role of endothelial signaling in the living brain, they had to develop new ways to both image the brain at very high speeds, and also to selectively alter the ability of endothelial cells to propagate signals within intact vessels. The team achieved this through a range of techniques that use light and optics, including imaging using a high-speed camera with synchronized, strobed LED illumination to capture changes in the color, and thus the oxygenation level of flowing blood. Focused laser light was used in combination with a fluorescent dye within the bloodstream to cause oxidative damage to the inner endothelial layer of blood brain arterioles, while leaving the rest of the vessel intact and responsive. The team showed that, after damaging a small section of a vessel using their laser, the vessel no longer dilated beyond the damaged point. When the endothelium of a larger number of vessels was targeted in the same way, the overall blood flow response of the brain to stimulation was significantly decreased.

The researchers damaged the endothelial layer of cells, causing oxidative stress.  After this damage, the blood vessel was no longer able to dilate past the damaged point.  This process restricted blood flow to the neurons.

The damaged endothelium is what initiated lowered blood flow, also known as hypoperfusion.   We see hypoperfusion in MS, Alzheimer's, Parkinson's and dementia.

MS experts have maintained that it is the death of neurons in the brain caused by the unknown disease process we currently call "multiple sclerosis", which leads to a lowered need for cerebral blood flow.   Their assumption has been that the hypoperfusion of the MS brain (which is a scientifically documented fact) is due to MS.  
http://ccsviinms.blogspot.com/2010/08/blood-flow-and-white-matter-lesions.html

But what if this chicken and egg supposition has been wrong?  Have 70 years of EAE postulation and drug development placed the focus on the wrong cells?

Dr. Hillman is urging other researchers to join her in the pursuit of understanding how the vascular endothelium and brain health are connected.  

“Our latest finding gives us a new way of thinking about brain disease—that some conditions assumed to be caused by faulty neurons could actually be problems with faulty blood vessels,” Hillman adds. “This gives us a new target to focus on to explore treatments for a wide range of disorders that have, until now, been thought of as impossible to treat. The brain’s vasculature is a critical partner in normal brain function. We hope that we are slowly getting closer to untangling some of the mysteries of the human brain.”

I share her urgency.  It was seven years ago when I first began looking at the correlation of endothelial dysfunction and neurodegenerative disease.  Blood flow to and from the brain matters.  Understanding how we can reverse endothelial dysfunction and oxidative stress--not only through future drug development---but through present day lifestyle, exercise, nutrition, UV rays, smoking cessation and other means-- is critical in helping those who are suffering from cerebral hypoperfusion found in MS, Parkinson's, Alzheimer's and dementia.

Here's the program I created for Jeff.  I hope it can help you, too!

http://ccsvi.org/index.php/helping-myself/endothelial-health

Time equals brain,

Joan

Full paper A Critical Role for the Vascular Endothelium in Functional Neurovascular Coupling in the Brain  http://jaha.ahajournals.org/content/3/3/e000787.full

Medical Hierarchies

February 2,  2013  

We are beginning to see how the hierarchical power structure at universities and in medical journals is impacting research into CCSVI. Negative studies are picked up time and time again in the press and regurgitated ad infinitum,  while positive and corroborative CCSVI research from vascular specialists is ignored. 

Why?

Aside from corporate conspiracy theories (which may be true, but near impossible to prove)---there is another force which comes into play in research.

The hierarchies of medical disciplines.

Here is a paper written in the 1980s, regarding the favoring of the immunologists' explanation of MS over the vascular paradigm. 

Yes, this debate has been waging for many, many years-it is not new.

http://onlinelibrary.wiley.com/doi/10.1111/1467-9566.ep11340153/pdf

From the paper on Social Constructionism and medical sociology: a study of the vascular theory of MS--

"A recent debate surrounding the pathogenesis of multiple sclerosis is analysed in terms of the skills, interests and backgrounds of the medical personnel involved. It is noted that the proponents of the vascular theory possess developed expertises in interpreting disease in

structural, vascular terms, whereas their opponents' skills lie in immunology or neurology. Different observers have produced different conceptions of the disease because modes of

observation, and the points from which observation takes place, differ. 

It is also noted that the debate over the causation and treatment of MS has occurred between a large and powerful social group and a weak and marginal one. The effects of this power inequality on the production and assessment of knowledge about MS are investigated."

The authors go on to explain how the "large and powerful group" of more highly paid and trained neurologists got to "own" MS. Because of this, any other theories or modalities of MS diagnosis or treatment from weaker and less powerful medical groups or patients are shot down, called quack theories and easily discounted.

This is a very important paper for us to understand.  It reviews Dr. Philip James' studies in Scotland in the 80's. He likened the MS disease process to decompression sickness and oxygen deprivation he found in divers. James, like Dr. Roy Swank, thought this might be due to blockages in the vascular system, and he had much success treating MS patients with hyperbaric oxygen. 

This paper helps us understand what we've always been up against- and why the internet is a democratizing power in this "social constructivism" and how we can change the dialogue, and insist on more vascular research.  We can lend our voices to help the "marginalized" vascular profession.

We may not be able to control what the mainstream/corporate press publishes in terms of research results, BUT we can inform one another, and help the vascular doctors have a platform for their research.

Spread the word.

Joan

Endothelial Health Program

August 26, 2009 at 7:51am

Here is the original program I wrote up for Jeff in 2008 and shared on ThisIsMS.  This was before we'd read Dr. Zamboni's research.  I sent it to Dr. John Cooke at Stanford University. Dr. Cooke's endothelial research and his book, The Cardiovascular Cure, were highly inspirational to me, and I wanted to get his thoughts on MS as a disease of endothelial dysfunction.  It is suggested for healthy vascular living for MS patients.  I knew that there was a connection between Jeff's hypercoagulated blood, high liver enzymes, c-reactive protein, petechiae and inflammation--and thought maybe the program might help others with MS.

There is a shortened version hosted on the CCSVI Alliance site-

http://www.ccsvi.org/index.php/helping-myself/endothelial-health

For those who want to read more, here's the full paper:

Overwhelmed:

Reversing Endothelial Dysfunction 

By Joan Beal

I am not a doctor. Not even close. I took chemistry in high school, but I didnʼt like my teacher and chatted my way through labs. That was the end of my science career. I majored in music in college, and have spent my adult life pursuing the creative arts. Although math and science were never to be my forté, I do enjoy puzzles. I cannot walk away from an unfinished Sudoku, and much to my husbandʼs frustration, I always shout out “I know who did it!” before the first act of a mystery is completed. I guess Iʼm a “big picture” gal- I like to step back and find the connections between seemingly disparate things. You could also call me a “holistic” person, because I enjoy finding commonalities and patterns. Just like the nine digits in the Sudoku box.

Multiple Sclerosis is not a puzzle I was prepared for. By the time my husband finally went to the doctor, after a month of my pleading and cajoling, he was really sick. He was numb on his left side and his feet were burning. He went in for an MRI and the technician added the contrast dye to his veins. We knew he was in trouble.   When we went to meet with the neurologist, I noticed under the harsh fluorescent lights his skin had a jaundiced pallor. And what were those strange red dots up and down his shins? I hadnʼt seen him in shorts recently...what were those?

His neurologist said that had nothing to do with his illness. He had multiple sclerosis.  It was an autoimmune disease. My husbandʼs t- cells were attacking the myelin on his brain and spine, and he had 20 cerebral lesions to show for it. His blood labs had come back with some irregularities;  he had extremely high liver enzymes, high coagulation numbers and high c-reactive protein,  and once again the neuro said, “But that has nothing to do with his MS.” She recommended a disease modifying treatment- a daily shot called glatiramer acetate or Copaxone,  to retrain his t-cells- She also gave us a list of some nutritional supplements that she said “might help”, and sent us on our way.

I was incredulous. How could my healthy husband one day just wake up with an immune system in attack mode? And why werenʼt things like those spots (Iʼd later learn they were called petechiae) and his liver enzymes and jaundice related to this new illness?

So I went to work deciphering this new code. I read medical journals on line, and the more I read, the more questions I had. Because MS is incurable and no one really knows what causes it, it is open to more theories and less concrete evidence than almost any other disease. And it can be a variable illness, causing disability and paralysis in some, while remaining relatively benign in others. It has been almost two years since my husbandʼs diagnosis, and he is still stable and in remission from his first flare. We thank God everyday for his health and ability to carry on with his life.   Jeff has radically changed his diet, maintains a healthy weight through exercise, and takes supplements. He has also worked on lessening the stress in his life and finding ways to deal with neuropathic pain and fatigue, the nasty reminders of his disease. He is fortunate, and he is determined. But we realize that nothing is guaranteed.

I am not writing about curing MS. I do not believe I have the abilities or knowledge to cure anyone. I am only addressing ways to minimize the affects of disease and to help people feel better and perhaps remain in remission. For now, my husbandʼs MS is not progressing, but I do not know how to stop his MS for good. Right now, it appears that only God can do that. Let me be clear, I am also not about blaming people for becoming sick. There is a genetic component to each of these diseases that no one would ever ask for or bring upon themselves. The reasons why people develop specific diseases goes beyond my limited understanding. But there is hope and relief through lessening the external factors which contribute to disease.

24 million Americans suffer from some form of autoimmune disease. These diseases, in which the immune system appears to turn on the self, include diabetes, MS, rheumatoid arthritis, and lupus. The number of afflicted is growing at an astounding rate. I believe all autoimmune diseases are related. Inflammation, vascular problems, coagulation issues, neuropathic pain and suffering are common to each affliction, although the specific area that is affected is different. In MS, itʼs a breech in the blood brain barrier of the central nervous system. In rheumatoid arthritis, itʼs the joints. If we step back far enough from the names of individual diseases and all the various specialists who treat them, we can begin to see the big picture; and I believe it all begins inside each and every one of us with our blood.