Celebration!

UPDATE 2018---Jeff remains MS progression free eleven years after diagnosis, with no new lesions, and a continuation of healing.


Our family has some great news to share!  Jeff's new MRI shows a continued healing of his brain and spine.  His cervical lesions are now "less prominent" than they were on his last MRI in 2012, an indication of remyelination.   He has no new white matter lesions, and, most importantly, his gray matter structures are all healthy and normal, with no signs of atrophy.  This MRI shows actual healing---not placebo---when compared to Jeff's very first MRI in 2007, which showed gray matter atrophy and enhancing lesions on the spine and brain.

It has been 8 1/2 years since Jeff's MS diagnosis, and 6 years since his venoplasty treatment at Stanford.  Jeff remains physically and mentally active, and has stayed on the Endothelial Health Program.  He has had no MS progression.  We do not take Jeff's health for granted.  We are very thankful for the wonderful CCSVI community and researchers, and we consider this blessing of good health something which we are responsible to share. We want to stay involved in the neurovascular community at large, because we remain convinced that it is essential to look at the brain's blood, cerebrospinal fluid and lymphatic flow when evaluating treatments.  

MS is an inflammatory disease in which neurodegeneration and gray matter loss is the only correlate to disease progression.  The autoimmune hypothesis remains unproven.  All of the current drug treatments---now, a $20 billion a year industry--- are based on the EAE mouse model of MS, which relies on stopping immune activation in the central nervous system, and uses white matter lesions to measure "success" of a disease modifying med.  None of these meds have been shown to stop MS disease progression.

New research on the brain continues to come in, and points to the brain's reliance on the major draining veins to maintain gray matter structures.  MS specialists remain intransigent;  by refusing to consider how slowed venous flow and endothelial dysfunction might be affecting their patients' brain health.

Yet the evidence continues.  Outspoken advocates who have treated their own MS with cardiovascular means of diet, exercise and lifestyle changes continue to speak out and gain followers.  These individuals are pointing the way to health and healing for the MS brain.

Dr. Terry Wahls  http://terrywahls.com

Matt Embry  http://www.mshope.com

Dr. George Jelinek  http://www.overcomingmultiplesclerosis.org

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


Even though each program has specific dietary differences (paleo, anti-allergen, low fat)---it's important to notice the lifestyle measures which these programs SHARE.

1. Healthy, whole foods, with plenty of colorful organic fruits and vegetables
2. Removal of processed foods and transfats
3. Smoking cessation
4. Increased intake of Vitamin D with UV ray exposure and supplementation
5. Regular cardiovascular exercise
6. Meditation or some form of stress relief
7. Consideration of the blood, CSF and lymphatic flow to and from the brain
8. Good quality and regular sleep
9. Maintaining a healthy weight
10. Addressing microbiome health with probiotics

There are things that can be done today, to help the brain heal.  Will these measures "cure" or "end" MS?  None of us know that for sure.  There may well be genetic factors which contribute to highly progressive MS, that cannot be completely addressed by these programs.  But we now have years and years of evidence compiling---Matt Embry is out the furthest with 20 years of no disease activity, George Jelinek is at 16 years, and Terry Wahls and Jeff are at eight years.

These numbers are impressive, and they matter.
Please be encouraged (which literally means, to give heart!!!)
The heart and brain are connected, and it's possible to take care of them.
You can do it, one day at a time,

Joan and Jeff

Moving forward

For the many people with MS who were first treated for CCSVI in 2009 and 2010, It is more than insulting to be told that your benefits are “short-lived” or “not measurable” or “placebo.”  Especially when there is documentation that contradicts this claim.

As many of you know, my husband Jeff had difficulty walking at his diagnosis in 2007, but six years later, he is downhill skiing and mountain biking.  Yes, MS is a variable and relapsing-remitting disease, but I would like to propose something.

Jeff has had many tangible and quantifiable benefits from venoplasty. 

1. His cerebral blood flow and venous return were measurably increased. 

2 His gray matter atrophy reversed, and his gray matter now looks “normal” on MRI.  This includes his third ventricle width, thalamus and brain stem.

3. He has had no further white matter lesions, nor has he had another MS relapse.

4. He has EDSS improvement from 1.5 to .5

5. As a 50 year old man who was told he would progress quickly, due to the number of enhancing lesions he had at presentation, these quantifiable measurements, (which would be heralded as great victories for Tysabri or Rituxan, had he taken these drugs) matter.

And we are keeping Jeff’s medical records and his disease process is being followed, now 4.5 years past venoplasty.

Kathleen Lynch made a wonderful suggestion at the NCS conference---I had been asked by an audience member how I believed we could continue to move this research forward, and not let it be tossed into the trash bin-- as the MS Societies, MS specialists and pharmaceutical companies are currently recommending.

Kathleen stood up and suggested that patients needed to keep their medical records and documentation as a scientific proof of their disease process.

If you have documented proof of improvement in EDSS or on MRI, or disease cessation, I encourage you to document this,  and keep all of your records on file.  I think we may want to make a concerted, international effort, to begin a data registry--which includes this documentation.  And we will need to make a formal presentation of this evidence to the MS Societies and scientific councils who are in charge of research funding.  I would like them to meet Jeff, see his MRI and assess him.

At the NCS Sherbrooke conference, which was not attended by any of the invited MS Societies or MS specialists, Sean Sethi from MR Innovations presented many clear MRV examples of the difference between stenotic jugular veins in people with MS and the open and flowing images of normal jugular veins.  The visuals were striking.

http://www.sciencedirect.com/science/article/pii/S0730725X13002117

His comment was that he wants this evidence to “be the hammer that takes the nail out of the CCSVI coffin.”

It is far too early for any organization to be proclaiming CCSVI research as over.

How can any group which purports to be looking after people with multiple sclerosis deny the very clear evidence of venous abnormalities in MS, and the documented improvements in many who have been treated to repair these malformations? 

To not pursue this research, to dismiss those who have MRI evidence of disease cessation and healing of brain tissue, is purely evil, and should not be tolerated.

For those who have this evidence, now is the time to get your files in order.  This goes beyond YouTube videos and anecdotal reporting.  This will be scientifically valid proof.

And we have it.

Joan