‘Time Is Brain’: Managing Brain Atrophy With MS

Early intervention is key to reducing brain shrinkage

by Ed Tobias | December 9, 2022

This is one of my “nobody ever told me that” columns.

I was amazed when I read a comment from one of my “MS Wire” readers recently about brain shrinkage. “I’ve had MS since 2011. I had no idea about brain shrinkage,” she wrote. I guess I shouldn’t have been surprised.

A survey taken in 2018 by the Multiple Sclerosis Association of America reported that, of the 1,337 people affected by multiple sclerosis (MS) who responded, only 20% considered themselves to be moderately or very satisfied with the information they received from healthcare providers about brain shrinkage. And 62.7% reported never discussing it with a member of their MS care team. On the other hand, about 78% of respondents said they were either very or extremely concerned about MS-related cognitive decline, and 29% said that cognitive impairment was significantly affecting their life quality.

So, it seems a good idea to provide a little primer about our brains and MS.

MS News Notes: Climate Change, MS Progression, Brain Shrinkage

Brain shrinkage is silent

The medical term for brain shrinkage is brain atrophy. But shrinkage is a good way to describe what happens. The brain’s volume is reduced. This happens to everyone, to some extent, as we grow older. But the term brain atrophy is used when more shrinkage occurs than would be expected for a person’s age.

Research indicates that in people with MS, the rate of brain atrophy is faster than in healthy people and is associated with disability progression in the absence of relapses. This is sometimes called silent MS, and it’s something we should all be aware of.

“While the insidious accumulation of disability is characteristic of the progressive MS disease courses, PIRA [progression independent of relapse activity] has recently emerged as a crucial clinical feature also in relapsing MS,” researchers wrote in JAMA Neurology.

What can be done about it?

Clinical trials report several MS disease-modifying therapies (DMTs) can slow brain atrophy, among them Aubagio (teriflunomide), Mavenclad (cladribine), Lemtrada (alemtuzumab), Gilenya (fingolimod), and the experimental therapy ibudilast. You can find stories about these DMTs by searching “brain atrophy” on the MS News Today website.

Another strategy to fight brain atrophy is to increase “brain reserve,” the ability of the brain to adapt after damage. Some research indicates this can be accomplished by living a brain healthy lifestyle. This involves things such as participating in physical and mental activity, keeping weight under control, limiting alcohol intake, and quitting smoking.

Hit it hard, hit it fast

Whether it’s done with medication or lifestyle modifications, a key to reducing brain atrophy seems to be starting treatment early with the most effective medication possible. As my neurologist likes to say, “Time is brain.” The phrase was coined a quarter century ago by neurologist Camilo Gomez in relation to the treatment of stroke patients, but it seems equally applicable to people with MS.

“Early intervention is vital” with a treatment that can reduce disease activity, as the 2015 report “Brain health: Time matters in multiple sclerosis” notes. I think that’s as true today as it was seven years ago. Maybe, with the highly effective DMTs available today, even more so. Remember, time is brain.

You’re invited to visit my personal blog at www.themswire.com.

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

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About the Author

Ed Tobias People say to write what you know and Ed Tobias knows about MS. He's lived with the illness since 1980, when he was 32 years old. Ed's a retired, award-winning broadcast journalist and his column combines his four decades of MS experiences with news and comments about the latest in the MS community. In addition to writing his column, Ed is one of the patient moderators on the MS News Today Facebook, Twitter, and Instagram sites. He’s also the author of “The Multiple Sclerosis Toolbox: Hints and Tips for Living with M.S.” Ed and his wife split their time between the Washington, D.C. suburbs and Florida’s Gulf Coast, trying to follow the sun.

Comments

Leanne Broughton

I wa not aware of many disease progressive symptoms until I happened to read about them. It would have been sensory overload ro hear all things that happen over the course of MS. It would have scsred me, as if I wasn't scared enough.. Some things are important to know. I do feel like I've fallen through the cracks sometimes. Ì should have been more involved wth the MS Society earlier and would have had more timely information..

Ed Tobias

Well, Leanne, I know you're involved now and I can't imagine you would allow yourself to fall through the cracks. Keep on advocating for yourself!

Penny Pennington

UB's Buffalo Neuroimaging Analysis Center and patient Advisory Council recently published a paper in the Journal of Neurology that discusses " Communicating the relevance of neurodegeneration and brain atrophy to multiple sclerosis patients: patient, provider and researcher perspectives. J Neurol (2022). https://doi.org/10.1007/s00415-022-11405-3," Our work makes recommendations on why, when and how to best communicate information on this sensitive topic.

Ed Tobias

Hi Penny,

I'm sorry I missed this paper. However, I may write another column about doctor/patient communication before too long and I'll look at the Buffalo study before I do.

Hope you don't have too much snow on the ground. I went to college in Ithaca, and dated a girl in Rochester, decades ago so I know what things can be like in your part of the world.

Sara

Hi Ed - As a newly diagnosed patient that recently started on Ocrevus as my first treatment, I always appreciate your columns and the info/perspective you offer! It's so inspiring to read about your experiences on this MS journey. I hope to one day give back to this community the way you have! With that said, I do feel knowledgeable about brain atrophy, and it's something my neurologist explained to me early on in my diagnosis as cognitive symptoms are one of my only lingering complaints. I hope over time, the science advances and allows me to restore some of what I feel has been lost.. but until then, I'll continue to hit it hard and hit it fast and delay or eliminate any future progression. Thanks again for all of the information and experiences you share! I'm listening and learning!

Ed Tobias

Hi Sara,

Your nice comments have made my day. I try my best to try to provide some sort of info that will help people with MS live with their illness, whether via personal experiences or trying to turn "doctor speak" into something people will understand. I'm glad your neuro explains things well. Unfortunately, some don't.

BTW, since you like what I write I'll make a selfless plug for a book I've written. "The MS Toolbox" is designed for "newbies" and is available as a paperback and an e-book on Amazon. No matter what, keep on hitting it hard.

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‘Time Is Brain’: Managing Brain Atrophy With MS