MS news notes: Remyelination, CNM-Au8, diet and bones

Columnist Ed Tobias comments on the week's top MS news

by Ed Tobias | February 20, 2023

Welcome to “MS News Notes,” a Monday morning column where I comment on multiple sclerosis (MS) news stories that caught my eye last week. Here’s a look at what’s been happening:

More remyelination research

For years, most MS research has focused on stopping disease progression. In the past couple years, however, more and more researchers have been focusing on whether it’s possible to fix the damage MS has already done. They’re trying to find a way to repair the myelin coating of our nerves.

The latest of these is efforts is sponsored by Frequency Therapeutics, as MS News Today‘s Margarida Maia reports in “Frequency moving to test agents with remyelination potential.” Frequency hopes to launch a clinical trial by June 2024. It can’t come soon enough for people like me with significant myelin damage.

Primary progressive MS confirmed as own disorder in mouse study

Improving brain cell function

One of the less visible problems that occurs with MS is disease progression that is independent of relapse activity. Many disease-modifying therapies can help to slow disease progression by reducing inflammation.

A story by Marisa Wexler, “CNM-Au8 preserves white matter in RRMS patients’ brains: Phase 2 trial,” reports on the testing of a compound that’s designed to help people with MS by improving the functioning of nerve cells in the brain.

Keeping those bones strong

One possible solution to bone density concerns is diet, particularly increasing one’s calcium intake. Does it matter, though, whether you’re being helped by a dietitian while trying to boost that intake?

Find the answer in “Dietitian advice assists MS patients to improve calcium intake: Trial.” I’ve taken calcium pills for years, so no dietitian was needed. Have you done anything to increase your calcium levels? Have you ever used a dietitian? Please share in the comments below.

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

Lynn

Hi Ed. I’ve been enjoying your column for years! Thank you very much for your interesting articles. I have taken calcium supplements in the past and now I try to eat and drink more things containing calcium. I am 61 with SPMS, diagnosed back in 1990 with RRMS. I can relate to your SPMS information (but I think you have much better mobility than me!)

On a side note, do you know how John Conner is doing? His and your columns are ones I look forward to reading every week!
Thank you and take care.

Ed Tobias

Hi Lynn,

I'm glad you've been enjoying what I write and I hope some of it has been of use to you. My mobility has decreased to having to use two canes around the house but riding my scooter if I have to take more than about 75 steps. One way or the other, I get where I'm going.

As you probably know from reading his column, John is seriously disabled with MS. Back in December he took a downturn which has prevented him from writing his column. I'm happy to say he's now on the upswing and when I heard from him about a week ago he was hoping to get back to writing soon.

Regards,

Cheryl Conway

Dear Mr. Tobias,
I too was diagnosed at age 32, in 1992. I spoke with my primary (several times) about a dietician, he said he would have them contact me, but they never did.

Ed Tobias

Hi Cheryl,

What can I say? I guess it's too late to get a name from your PCP now, but you could always research one yourself if you think you could still use that help.

Randi R Woodworth

I have a nutritionist who is also trained in functional medicine. I also have osteopoenia and borderline osteoporosis. I do not take calcium supplements, but I do take Ossopan MD (Xymogen)and Osteoben (designs for health), which work together to support bone health. My bone density has increased since I began taking them.

Ed Tobias

Hi Randi,

Thanks for sharing that info and I'm glad you've been able to improve your bone density.

Naomi Davidson

I recently found out about the Swank Diet for MS patients, Dr. Swank studied MS patients for 25+ years and people are still being tracked today who participated in his studies. If you reduce your saturated fat intake down to 10% or less a day, you will feel AMAZING. I tried it very skeptically for a month and it’s changed my life! I very rarely have peripheral numbness now and the swelling and daily pain is practically at zero. It works wonders for me and maybe it can help you too. Research the Swank diet and try it yourself.

Ed Tobias

Hi Naomi,

Thanks for your comments. The Swank Diet is well known among the various diets that aim to help people with MS. It seems to work well for some and I'm glad that's the case with you.

Valentine

I would just like to point out that after a seizure back in 2012, a brain scan showed diffuse MS like lesions. At the same time a blood test showed I was deficient in Vitamin D. My PMD told me to take 10,000 Units of Vit D3 daily. Subsequently, I also found out around the same time I had osteoporosis. (I am a 58 yr old male) There are many (perhaps anecdotal) studies showing a higher incidence of MS in northern regions that receive less sunlight. I am sure there is more than one reason for developing MS, but for many it could be simply a lack of Vit D3. I still think this is overlooked. A brain scan I had 10 years after the original one showed no progression of the lesions or increased numbers. I have not had any further symptoms, but I do get fatigued fairly quickly. On a final note, my osteoporosis also showed consistent signs of improvement in the last 10 years. I hope that the simplest remedies could at least help prevent some types of MS and (Osteoporosis).

Ed Tobias

Hi Valentine -

There have been several studies, over many years, showing the number of people with MS rising as you move further away from the equator. There are also studies showing a connection between MS and a low level of vitamin D. I don't think low vitamin D levels are the only cause of MS, but I do think it's one factor.

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