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

Thursday, May 15, 2014

Report from the AAN conference---What Do They Know?

Please read the transcript and/or watch this Medscape video from the recent American Academy of Neurology's 66th Annual Meeting in Philadelphia.  It is sobering.

http://www.medscape.com/viewarticle/825066#1
(You can join for free to view the videos and read articles.)

All of the panelists are MS specialists.  These are the experts. 

In it, we learn that:

1. MS disease progression and disability appear to be tied to brain atrophy, not new lesions or relapses.
A drug for MS, called laquinimod, appeared to help slow disease progression and atrophy in MS, although it had no effect on relapses and lesions.  In fact, laquinimod failed to slow relapses or lesions any better than placebo in the initial trial of RRMS.   No one really knows how laquinimod works.  That's right, the Mechanism of Action (MOA) is unknown.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3825117/

It could be that laquinimod is increasing brain derived neurotrophic factor (BDNF) and preserving neurons.   Increasing BDNF is known to help the brain by preserving brain tissue.
You can increase BDNF levels yourself, without laquinimod--by exercising.
http://www.ncbi.nlm.nih.gov/pubmed/21198979

Bottom line--the MS specialists really aren't sure what is going on, or why laquinimod worked....but they'll be happy to try it out on people with progressive MS.  And as their disclosure statements show us, all of them have received honoraria, speakers fees, consultant fees and funding from Teva Neuroscience, the company developing laquinimod.


2. Genetics really do not play into the risk of developing MS.  The new genes associated with MS only add about 1% more to risk of susceptability.  Genetics studies have, for the most part, been a dead-end.

3. In fact, environmental factors, like sunlight exposure, vitamin D and Epstein Barr exposure, appear to be more important.  

4. Smoking is not good for people with MS.  It hastens disease progression.  There are lifestyle changes that people can make, which will slow disease progression.  And smoking appears to be the most "modifiable" risk.  Why is smoking bad for people with MS?  They don't know.  It could be how the "mucosa of the lungs interacts with the immune system during smoking."  

Or it could be, hmmm...just maybe... how smoking, a known risk factor for stroke and cerebrovascular disease, impairs blood flow and oxygenation of the central nervous system?
http://www.nature.com/jcbfm/journal/v16/n4/full/9590091a.html
http://jap.physiology.org/content/35/6/820


Watch this video and see behind the curtain of the great and powerful Oz.  View the emperor in all of his regal clothing.  These guys are basically saying, we don't know what MS really is or what to do about it.  If I have learned anything about MS in the seven years since Jeff's diagnosis, I have learned that the EAE model of MS is wrong, and the current treatment of MS is not helping patients live longer, more vital, less disabled lives.
Here is more on the futility of EAE in MS research.

"... a false orthodoxy claiming that multiple sclerosis is an autoimmune disorder has developed and formed the present basis of treatment, drug trials and research. The outcome of this misplaced creed has been truly catastrophic.” 
http://www.expert-reviews.com/doi/pdf/10.1586/ern.10.69

However, I have witnessed how pioneers who actually have MS---people such as Dr. Terry Wahls, Dr. George Jelinek and all of you---have taken measures into your own hands.  You have found the direct correlation of your disease to slowed cerebral blood flow from venous malformations.  You have had venoplasty and changed your lifestyles.  You are getting more sunshine, UV rays and vitamin D.  You have quit smoking, started moving more.  You have gotten off sugar and gluten,  are eating more whole foods and are dealing with life's stresses.   You are healing your gut with whole foods and probiotics.  You are lessening your exposure to toxins.  You are healing your endothelium! You have explored other avenues and differential diagnoses.

And you are living, wonderful, anecdotal proof of the ability to slow, stop and reverse MS disease progression!  Proof of the fact that there are things we can do to reduce inflammation and maintain gray matter.  Lifestyle changes, like smoking cessation, exercise and nutrition-can really make a difference.

Don't wait another minute, let alone a decade, for these guys to figure it out.  Take care of yourself, today!

Joan







2 comments:

  1. Ok reading that really helped to validate why I have changed my life so much, and honestly just what I needed. I finally quit smoking three months ago but I have been slipping on my diet a little bit, so reading this just helps give me a little bit of reassurance that I changed all these things for a good reason. Thank you,

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    1. Glad this post will help your motivation, Angela! There are things we can change, and things we can't. Quitting smoking, eating better and moving more are all things that have science behind them, and can help slow MS progression. Keep at it!!! Be well.

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