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, July 5, 2022

Guardians of the Brain

A recent paper in Nature explains how the brain's newly discovered immune system protects our gray matter.  https://www.nature.com/articles/d41586-022-01502-8

For those who have followed this blog over the past 15 years, you might remember my posts on the ground breaking work of Dr. Michal Schwartz.  It is thanks to her pushing back against the status quo and the work of her student, Dr. Jony Kipnis, that we now understand the importance of immune cells in the brain.  Neuroimmunology is a growing field, and has changed all we thought we knew about the central nervous system.

In 2002, Dr. Schwartz published a new paradigm for MS treatment with her then-student, Dr. Jony Kipnis.  They were concerned that MS treatments which suppressed or ablated the brain's immune cells would eventually be harmful to the brain.  Even though inflammation might be tamped down in the short term, the brain would atrophy, or lose volume, without its protective immune system.  She suggested modulating immune cells, and boosting the brain's immune response, rather than getting rid of it, which made sense to me.  https://pubmed.ncbi.nlm.nih.gov/12374425/

Jeff recently had a new MRI.  It's been 15 years since his MS diagnosis, and we are thankful to report that his gray matter is "normal and healthy" with no loss.  He has no new white matter lesions and he's still biking, hiking, jogging and working.  We are very thankful for his mild course in this disease, and thankful he was treated for stenotic jugular veins and dural sinus.  He was fortunate to be able to stay active and adapt a new lifestyle. 

I no longer share my opinions or advice on MS treatments on the internet, as I felt it was not my place as a lay person to give medical advice.  But I will continue to share the science.  

Please follow the ISNVD for further publications and research on the vascular connection to diseases of neurodegeneration.   https://isnvd.org

As the venous dural sinus in the place where the brain's immune system connects to the vasculature, neuroimmunologists will be exploring this further. 


stay well!   

Joan



Sunday, January 23, 2022

Epstein Barr Virus (EBV) and MS

The association of the Epstein Barr Virus (EBV) and multiple sclerosis is one that has evolved over of decades of research.  95% of all humans carry the dormant or "latent" EBV virus.  But in people with MS, there is an activation of the virus, which is seen in tissue of autopsied brains. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2118531/ 

I wrote about this connection exactly 10 years ago.  https://ccsviinms.blogspot.com/2012/01/hypoxia-reactivates-latent-ebv-january.html

EBV is in the news a decade later, because researchers at Harvard have a new study published in Science  https://www.science.org/doi/10.1126/science.abj8222

Their conjecture is that if people are never infected with EBV, they will never develop MS.  Well, that would be wonderful!  Incredible.  An end to MS.  An EBV vaccine will be developed, and it may well help future generations.  But what about the people alive today on the planet, the 95% of us who are already infected with EBV?  

Back in 2011, researchers at Buffalo Neuroimmaging Analysis Center published a paper in Expert Reviews on how venous stasis (or impeded blood flow out of the brain) might be responsible for a reactivation of EBV.  This paper no longer exists online, which is heart-breaking to me.  The only place I found links to this hypothesis was in my writing.  

But I would like to suggest that this be further explored. 

The association between EBV infection and CCSVI has not yet been explored; however, it could be hypothesized that venous stasis in the superior saggital sinus due to extracranial outflow impairment could affect the drainage of bridging veins that pass through the subarachnoid space (near the meninges and EBV-infected B-cell follicles) and contribute to EBV activation. The venous stasis hypothesis in the SSS may contribute to understanding why so many different viruses and bacteria [3,111] have been linked to increased MS susceptibility risk over the last 50 years.

I have stopped following MS research and writing about it for many reasons.  Jeff continues to do quite well, and I am not the person to be giving out medical advice.  

Follow the ISNVD.  Listen to experts.  Take care of yourselves. 
Be well,
Joan 








Thursday, September 10, 2020

MAGNIMS consensus recommendation: Measure brain and spinal atrophy in MS

Readers of this blog have already learned about the importance of monitoring their gray matter.  Volume loss, or the shrinking of tissue, is also referred to as atrophy and neurodegeneration.  I explain this process in more depth here: link  The MRI measurement of atrophy has been proven to be more indicative of MS progression, when compared to white matter lesions.  (The fact that we still use a seventy year old mouse model to measure white matter lesions for MS drug efficacy boggles the mind.)  This paper advises that MS specialists look at other MRI markers to understand how treatments might be impacting loss of tissue and MS progression.

A consortium of international MS experts published this review earlier in the year, right before COVID, and I missed it.  It was not sponsored by any specific drug company.  The MAGNIMS study group (Magnetic Resonance in Imaging in MS) was comprised of MS experts from seven countries.  I highly recommend discussing this research with your doctor, to make sure you understand how your own gray matter is doing.  

link to MAGNIMS study in Nature

The authors discuss lifestyle factors which impact brain volume. I like to call these factors "the things we can change."   There are things we can do today to maintain our gray matter.  The heart brain connection is real, and vascular health impacts our brains.

Many lifestyle factors, including physical activity124, influence estimates of brain volume. A higher level of alcohol intake has been associated with a higher rate of brain atrophy over a 6-year period115 and with a specific pattern of regional involvement of the white matter and grey matter125. A similar effect has been described for cigarette smoking and substance abuse (for example, marijuana use)115,126. Many systemic conditions, such as diabetes, chronic kidney disease, hypertension, obesity and vascular conditions can also accelerate brain atrophy115,127,128.

Please notice the mention of vascular conditions.   All of this is new.

I've written about how Jeff's gray matter atrophy was reversed thanks to vascular and lifestyle intervention.  This post is from 2018 Celebration!   Jeff's good health continues in 2020, and he is still hiking, biking, composing, and active.  He's also down to his high school track star weight (178!) and has built up muscle tone.  He remains my inspiration.  Our goal, God willing, is to stay healthy and active, and live to see the end of this pandemic.  We work on managing the things we can change--by eating whole foods, moving every day, getting sunshine, staying connected to family, praying, meditating, making music, laughing, helping others, and letting go of the factors beyond our control.  I've mentioned the serenity prayer before.  link Written in the trying 1930s by Reinhold Niebuhr, American theologian, it is a reminder to take each day at a time, especially as we face difficult times. 

Here is to getting through this- with renewed health-- physically, emotionally, spiritually.

with love from smokey California,

Joan