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

Monday, December 7, 2015

Vitamin D News--it boosts remyelination!

This just in today----

Vitamin D boosts remyelination
Researchers at the University of Cambridge set out to find what controls oligodendrocyte progenator cells (OPCs) ability to differentiate and create myelin--and discovered that it is Vitamin D which binds and activates vitamin D receptors and controls myelin sheath regeneration.  In fact, remyelination of axons is impaired when Vitamin D receptor (VDR) is blocked.  When Vitamin D was added to the brain's stem cells, production of OPCs increased 80%.
http://www.eurekalert.org/pub_releases/2015-12/rup-asf120115.php

In case we need even more proof that Vitamin D is an important part of MS recovery,   I'd like to round up the latest crop of papers, published in 2015,  linking higher Vitamin D levels with better health for people with MS.


Vitamin D prevents brain atrophy
Researchers at Yale University discovered that higher serum levels of Vitamin D is linked to higher levels of gray matter in the brain, and lower rates of tissue loss, or brain atrophy, in MS. They looked at 65 pwMS and measured brain volume on MRI.   The strongest correlation was between low Vitamin D levels and brain atrophy.
http://onlinelibrary.wiley.com/doi/10.1111/ene.12844/abstract

Vitamin D strengthens endothelial cells
A study from the University of Utah found that Vitamin D stabilizes the endothelium and strengthens the vasculature.  It acts directly on endothelial cells to inhibit vascular leak.  Since inflammation and "auto-immune" reactions are a function of plasmic particles leaking into tissue and setting off an immune reaction (in places like the gut or blood brain barrier)---finding ways to strengthen endothelial cells is vitally important.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4607301/pdf/pone.0140370.pdf

Higher Vitamin D levels means more time from RRMS to SPMS conversion
Researchers in the Netherlands found that there was an association of low Vitamin D levels at the start of diagnosis of MS which was linked to an early conversion to SPMS.  Those with higher Vitamin D levels took longer to convert to SPMS.
http://www.ncbi.nlm.nih.gov/pubmed/26598277

Higher levels of sun exposure decreases MS risk
Australian researchers find the UV ray exposure is associated with lower MS progression rates and disease activity, through both Vitamin D and non-Vitamin D pathways.  UV rays modify and regulate immune cells.
http://www.futuremedicine.com/doi/full/10.2217/nmt.15.33


Pretty impressive research!  But are the benefits of Vitamin D for those with MS simply recent news?  Not really.  Dr. Ashton Embry's Direct-MS site is where Dr. Terry Wahls and many of us first heard about the connection between Vitamin D and improved MS outcomes almost a decade ago.  In fact, Direct-MS funded two trials on Vitamin D, and both had very positive results published in 2009 and 2010.  Thanks to the Embry Family for funding and pushing this research!
http://www.direct-ms.org/plannedresearch.html

I've been writing about the therapeutic powers of vitamin D on the vascular endothelium since 2008.  I also included sunshine and UV rays.
 http://ccsvi.org/index.php/helping-myself/endothelial-health

Here's a blog post from 2010, where I explain how Vitamin D provides "vasculoprotection" and prevents brain atrophy.
http://ccsviinms.blogspot.com/2010/07/vitamin-d-provides-vasculoprotection.html

Here's some completely anecdotal evidence from our home:
Jeff's Vitamin D level has stayed around 70ng/mL since he began supplementing and getting rays, and he continues to do well, with no MS progression or disabilities.  His Vitamin D level was at 15ng/mL when diagnosed for MS in 2007.  We had to pay for his first D3 test, since it wasn't covered by insurance. Our doctor asked why we wanted his D3 levels tested, and I shared the Direct-MS site with her.  Since then, our insurance company has seen the light (pun intended!) and covers yearly testing of D3 levels.  As for me, I hadn't been taking any D3 supplements, but that's recently changed. This past spring, my level was 17ng/mL and I was put on a high dose (50,000IU) weekly dosage for 2 months.  My levels are now good at 65g/mL and I maintain that with 4,000IU daily. I have much less arthritis pain and more energy.  There's a link to optimizing Vitamin D levels for healthy people, too.

Also know that there are many environmental factors which can contribute to a lower Vitamin D status- including obesity, older age, living in a more northern latitude with less UV exposure, smoking, skin color and pigmentation, micronutrient and mineral deficiencies (especially magnesium and zinc) and genetic mutations on the Vitamin D receptor (VDR) gene---and all of these factors may influence your serum Vitamin D levels.

So, while this info on Vitamin D is not new or ground-breaking for most following MS research, it is further building on the foundation.  Let this be a shout out to all people with MS.  Find out what your Vitamin D levels are, and make sure you optimize them!  This doesn't always mean simply taking a supplement.  It might involve more sun exposure or phototherapy, quitting smoking, losing weight and eating a whole food diet.  Work with your healthcare provider to establish the best program for you, and get those numbers up!  And don't forget, it's not about one pill or supplement, it's about living a new life.


Be well,
Joan




Thursday, December 3, 2015

Confrontation

I was minding my own business, internally humming a John Philip Sousa march to keep up my pace (yes, I am a marching band nerd), as I hiked along the trail near our home.  Up ahead, about 25 yards ahead of me, I saw a coyote searching for prey in the underbrush.  It wasn't one of the scraggly coyotes we usually see in our neighborhood, it was rather large and well-fed predator.  A fighter.  Instead of continuing on the trail, I made an immediate decision to turn around, and headed back towards the main road.  I was in no mood for a confrontation.  I know that most coyotes will scare if you make a loud noise and look big and threatening, which isn't too difficult for me as a rather sturdy opera singer.  Studying this particular animal, I didn't feel as sure of my human superiority.  I went the other way and avoided the confrontation.

Lately, I've been feeling bombarded by confrontations.  Maybe you do, too?   We live in an exceedingly argumentative, in your face world.  Perhaps it's always been so, but I think we're all acutely aware of this fact, thanks to social media.  Our "news" sources pick up on this basest human desire for conflict, and provide us lots of clickable headlines.  Folks feel comfortable posting the vilest comments, hidden behind screen names and walls of anonymity. The more provocative the headline, the more clicks.  It's no longer about presenting actual news, it is about framing occurrences in a particular world view with a large side order of opinion. Clicks are selling soap these days.

Politicians understand this, and we are deluged daily with verbiage that seems as though it was transcribed from a middle school bathroom wall.  It's beyond shocking, and more saddening is the fact that it appears to be connecting with people.  Our family visited Washington, DC last summer, and I was moved to tears as we read President Lincoln's words inscribed on his memorial.  Will we ever hear this kind of intelligent, thoughtful discourse again?   We need to expect better from potential world leaders.

We all sense the precariousness of life.  Confrontational ideologies and words lead to avenging with guns and bombs.  As our population grows and natural resources become more scarce---water, clean air, trees, food, and yes, even oil---we are going to have to figure it out.  It is going to take a concerted effort.  May we be led, as Lincoln quoted Dickens in his inaugural speech,  by "the better angels of our nature."

For those of us who have been advocating for research and treatment in venous disease and multiple sclerosis, the initial push back and confrontation first came as a surprise, but is now a given.  When I brought Dr. Zamboni's research to Stanford University, I truly expected MS specialists to greet this research with enthusiasm and interest.  My naivete soon gave way to an understanding that research for a disease which already had 20 billion dollar a year pharmaceutical model would be guarded by the gate keepers of industry.  Why learn about MS etiology and help people, when there's already so much money being made on drug treatments?

As advocates for expanded MS research, we've all dealt with this confrontation and controversy. We've written letters to politicians and researchers, confronted MS specialists at rallies or conferences, made videos, replied to badly researched and one-sided news stories,  posted studies and research online,  raised money for clinical trials,  put on international conferences, started non-profits,  and shown up for each other.  At times, it's felt hopeless and exhausting.  But the truth is, we've all made a difference.

We may not have confronted the coyote head-on, but we have found ways around him.  By not going away and showing up.  By supporting research and sharing information with each other. By being encouraging and kind.  We just kept moving.

My walk took longer than normal today.  Because I chose to avoid a confrontation, I had to back track and head out to the road.  But that was just fine. I was able to talk to two of my neighbors and share gardening and health chit chat.  I got more exercise, hummed my Sousa march a bit longer, got more sunshine, and had this thought, which I've now shared with you.  Finding ways around confrontation, whether online or across the holiday dinner table, can sometimes reap wonderful rewards.

"In the confrontation between the stream and the rock, the stream always wins.  Not through strength, but through persistence."  Buddha


Peace,
Joan









Tuesday, December 1, 2015

Moving forward

Research into the vascular connection to MS is continuing and expanding in scope.  I am heartened to see one particular group of researchers growing in size and addressing many new discoveries.  The ISNVD is moving forward.

The program and registration for the 2016 International Society for Neurovascular Disease 6th Annual Science Meeting is now online.
http://www.isnvd.org/newyork

From the announcement:
We are proud to announce that the 6th annual ISNVD scientific meeting will take place in lower  Manhattan, New York City on April 29th and April 30th of 2016.
During the past few years, the field of neurovascular disease has witnessed a vast growth in clinical and translational research. 

One of the most exciting revelations in this "vast growth" will be presented by keynote speaker, Dr. Jonathan Kipnis from the University of Virginia.  Dr. Kipnis will be presenting on his lab's landmark discovery of the brain's lymphatic vessels in "The Brain Drain, Meningeal Lymphatics and Neurological Disorders."  You might remember the attention his research received in Scientific America and the medical press, when headlines proclaimed the existance of a link between the brain and immune system.  

Here's more on this "stunning discovery."

As the Journal of Experimental Medicine stated, it is time to "rewrite the textbooks."

Why does Dr. Kipnis' research matter?  Because he has discovered that the brain's immune system relies on the veins which drain the brain.   

Other recent research, like Gladstone Labs discovery that a drop of blood can instigate an MS-like immune reaction in the brain, is important in light of opening day topics such as Dr. Alireza Minegar's discussion of "MS as a Vascular Disease" and Dr. Chih-Ping Chung's presentation on cerebral micro bleeds.

And there will be much discussion on clinical trials for treatment, as specialists from Italy, the US, Australia, and Bulgaria will speak about their treatment trials for vascular interventions in neurovenous disease.  

Here is the program:

As we learned in 2015, the brain is not immune privileged.  It is connected to the body's lymphatic system by vessels which rely on veins for drainage.  We also learned that it does not take an "autoimmune" reaction to cause MS.  As in stroke or traumatic brain injury,  all that is needed is to initiate myelin-destroying inflammation is plasmic particles breaking through the blood brain barrier.  These discoveries point to the undeniable connection of the brain to the vasculature.

The current resistance to this very real connection and dogged insistance on the 80 year old mouse model of multiple sclerosis is holding back research.  It will be independent groups, like the ISNVD and Gladstone Labs, who will break through the pharma-controlled impasse in MS research, and find real solutions, based on current scientific evidence.

In the meantime;  live your best, heart-healthy life.  Don't smoke, move your body every day, eat nutritious whole foods, manage stress, get sunshine and supplement Vitamin D and B, if warranted.  There are things you can do today to help your brain heal.  

Don't believe me?  Just check out Dr. Norman Doidge's new, NY Times Bestseller book, 
The Brain's Way of Healing    

They thought that the brain
was too sophisticated for its own good.
That during evolution it became so complex
that it lost the ability to repair itself and
to restore lost functions
or to preserve itself.
They were wrong.
Because it turns out that its very sophistication
can be the source of a unique kind of healing…
The brain’s way of healing…


Here's to moving forward, and leaving the old, incorrect assumptions behind.

Joan