MS anti-inflammation and improvement from a cheap, safe OTC supplement we all know?

Studies show that oral N-acetylglucosamine produced benefits for remitting-relapsing, primary progressive and secondary progressive types of MS. After one month, nearly one-third of subjects reported less disability. No serious side effects were seen even after supplementing for long periods of time. As of last summer, the National Institutes of Health was continuing to study it, but as lead researcher Dr. Michael Demetriou of University of California Irvine School of Medicine points out, "Anyone can get their hands on [it now] if they have $20."

And that’s just what I’ve done, except that it was $17.99 — for potential MS anti-inflammation and symptom improvement.

I don’t know how many out there are like me, but I’m without an MS treatment. With primary progressive MS like mine, there are few disease-modifying drugs available. The DMT most prescribed for PPMS is Ocrevus, but my neurologist, who was one of the researchers that helped to get the drug approved, strongly warned me away from it because of the risk of respiratory infections that I, as a full-time wheelchair user, may not be able to fight off. So while the MS Society recommends that everyone with MS should be on a DMT, I haven’t been on one for years. At this point my case is only very gradually worsening, but I don’t know how much more spinal cord I have left before I develop breathing and swallowing problems or more.

Then, instead of just playing defense with symptom management alone, I’m been open to looking at promising research-study results. Nothing crazy. I stick to NIH-related stuff. One of my past neuros, who had MS himself, pointed me to a study about intermittent fasting, which I read and, yes, gave a try for a few months. It wasn’t for me, but I tried.

Another, I still stick to. Overcoming Multiple Sclerosis is a program started by Dr. George Jelinek in Australia, who has MS and went through the scientific literature of the time to come up with his protocol. It’s a number of lifestyle changes, like exercise, meditation, minimizing stress and taking daily omega-3 fatty acids in the form of flaxseed oil. The most difficult step for most would be the largely plant-based whole foods diet, except for allowing various cold-water fish — so really it’s a pescatarian diet. The thinking behind it is to minimize saturated fats, which according to the work of influential doctors Swank and McDougall, contribute to the most rapid MS deterioration. I tried going the extra step of cutting out meat altogether, since I was 95% of the way there already, and I did fine with it, and have been vegan now for about a dozen years.

There are no miraculous cures anywhere on this page. OMS is about maximizing your well-being while living with MS, including using DMT’S, Jelinek writes.

Still, taking glucosamine — make sure it’s oral N-acetylglucosamine for best results — which is available for cheap at your local anywhere store, to maybe get both anti-inflammation and improvement? With little or no side effects? Tantalizing, yes?

Related articles:

https://jneuroinflammation.biomedcentral.com/articles/10.1186/s12974-023-02893-9

https://www.webmd.com/multiple-sclerosis/news/20240710/could-help-be-coming-for-progressive-multiple-sclerosis

https://multiplesclerosisnewstoday.com/news-posts/2023/09/19/sugar-molecule-supplements-glcnac-may-ease-inflammation-ms-trial/

https://www.ucihealth.org/news/2024/07/progressive-multiple-sclerosis

https://tinyurl.com/baj4ejzb

https://multiplesclerosisnewstoday.com/news-posts/2020/10/09/simple-sugar-molecule-may-be-potential-myelin-repairing-therapy-multiple-sclerosis-mouse-study/

Newly diagnosed "can truly be optimistic about their prospects for a life free from disability"

Years ago I was skeptical of all articles like the one I'm highlighting below. I'd see them regularly -- 'The New Drug on the Way Could Be a Game-Changer' or 'A Cure May Be In Sight,' stuff like that -- I mean, how many times can you hear them cry wolf? Particularly when you have primary progressive and there were no treatments at all. But now there is so much going on, and the post-pandemic science has moved the sticks so much. … The landscape feels much different to me now. It doesn't smell like BS anymore. (How's that for unscientific?) Even if there still isn't a treatment for me. Here's to someday. --

Dr. Stephen Hauser, who has been working on MS for decades, is hopeful that the world is on the cusp of a new era in MS. “The battle is not yet won, but all of the pieces are in place to soon reach the finish line — a cure for MS. … I think we can, in the next few years, completely suppress the disease in most people, if the proverbial tea leaves continue to point in the direction that they do today,” he said. And a cure for MS could be close behind.

And in the last decade, UCSF researchers have made incredible advances that could, one day, reverse MS symptoms or even treat the disease before it begins.

Today, clinical studies like those being conducted by the UCSF Weill Institute for Neurosciences, which Hauser directs, are investigating new ways to aggressively treat MS sooner with existing medications and new, more powerful versions. They are also concentrating on myelin repair. The Institute is applying lessons learned from MS to develop treatments for degenerative brain disorders like Alzheimer’s and Parkinson’s, as well as ALS (amyotrophic lateral sclerosis).

Excerpts from full article: "A Cure for Multiple Sclerosis? Scientists Say Within Our Lifetime."

Make your plan to vote! Sign up for tomorrow's MS Society voting webinar.

For health care and insurance, disability policy and medical research, this will be a big election. Whoever you plan to vote for, it's important to know the "how" — because every state has different voting and registration laws.

On Tues., Sept. 17 at 2 PM ET/ 1 PM CT/ Noon MT / 11 AM PT, voting expert Michelle Bishop of the National Disability Rights Network gives you info and answers questions to help you form your own voting plan. Sign up and make sure you have your say!

https://p2a.co/21fsGql

Your place of power: How online MS support groups can enrich your life

        Support groups are powerful places. They can be safe harbors, where we find friends, shoulders to lean on, or someone who will actually listen. How rare is that when we need those things the most?

        I’m no expert, but after 30 years with MS, I’ve seen my share of support groups. As many as I’ve seen, I still wish I’d joined even more and met even more people who shared my situation – because a good support group is such a lifeline. It’s a fire in the hearth on the longest night of the year, and in good times, is a wind in your sail because you know that somewhere is a group of people who know you’re not lazy, not “crazy,” and are fully deserving of dignity and respect.

        One of the most insidious enemies for me and others with MS is isolation. While we’re battling the five-alarm fires of MS (you know what they are) with everything we’ve got, isolation is doing its quiet work in the background, building up brick by brick. When mobility impairments, fatigue, depression and a host of other symptoms arise, so do barriers and isolation from the rest of the world. The terrible irony is that right when we need support the most, the barriers creating isolation in the first place are also turning the effort of going to group meetings into more a stressor than a safe harbor. That’s where online support groups become such a blessing.

        Continue at the "Momentum Magazine" blog: https://momentummagazineonline.com/blog/find-your-place-of-power-how-online-ms-support-groups-can-enrich-your-life/

Put Your Heart Into It: Support Those Who Support Us

These are polarizing times, my friends, but there are some basic things we'll always have in common. Most of us love chocolate. The laughter of babies. And Scooby Doo. But even more basic, since you're reading this now, is that your heart is beating. No matter who you are, where you are, what you've done today, or what you're going to do, I predict that your heart is beating. Mine is, just talking to you right now. You have that effect on me.

It beats dozen of times every minute, thousands every hour. Bump-bump-bump, it keeps on pumping. Bump-bump-bump, delivering nutrients and oxygen to power the whole machine that is your body. It's the thing that never stops, no matter whether you're running a marathon, binge-watching a whole weekend of TV, or jumping a row of school buses with your motorcycle in front of Caesar's Palace, it's always going in the background, bump-bump-bump. Beneath the hundreds of conscious things that we do day after day, we take it for granted that, bump-bump-bump, it is still beating. Bump-bump-bump. Without any accolades, or even a social media account, it goes bump-bump-bump.

There are people who function like this, too. People doing the kinds of things we rely on without us ever thinking about it. We learned this in a big way during the lockdown. Suddenly everything shut down, suddenly things that we needed on the daily were no longer there. But we still needed to grocery-shop, fill up with gas, and use electricity for our computers to run Zoom, right? Those store employees, service station attendants and utility workers got new respect and a new name: essential workers. Like our hearts, they were working in the background. The whole time, quietly, diligently, day and night. Suddenly they were everyone's new best friend. Everyone hearted them.

Like our hearts, the essential workers continue producing even though we might treat them like crap. Some essential workers got pay bumps when everyone realized just how essential they are. Many had the extra pay snatched back away when things were deemed safe again. And now, some employers are having a hard time attracting these ex-essential workers. Similarly, one out of 5 healthcare workers have left their jobs. I wonder why. Like the hearts in our chests, if we treat them badly for long enough, they stop hearting as much.

One special class of essential workers have been putting their very lives on the line taking care of Covid patients in the hospitals for almost two years. Healthcare workers have labored under extraordinary stress, overwork, privation (remember how long it took to catch up on PPE?) and even disrespect and physical attacks. They continue putting themselves at risk, treating others who have refused to take the simplest free measures to protect themselves. This goes on because healthcare workers are a tiny minority who work in enclosed spaces out of sight from the rest of us. But whenever we've got an owie, they #$^& well better be on duty and waiting for us with hot coffee, right?

This is similar to the deal that military people get. A tiny minority serves and fights, often returning to war time and time and time again. It goes on because they are out of sight from the rest of us. I'm writing this on Veterans Day, when we like to thank them for their service. But on the next day, are we caring enough for the 40,000 vets who are homeless? For the 17 vets who commit suicide every day? For their families who go hungry? Or are they, and their sacrifices, out of sight out of mind too?

Caregivers are treated the same way. November is National Family Caregivers Month. Those who ensure the well-being of our ever-growing population of elderly, children and people with disabilities, are in crisis. For instance, base pay in our second-largest state, Texas, is $8.11 per hour, when one can go down the street to deliver pizzas for much more. One in five people are being cared for by unpaid family members. About the same percentage must provide unpaid care to family members. Mostly, this affects women, whose ability to work has already been jeopardized by the measures taken by schools to control the pandemic. We do not even have paid emergency and family leave provided by all other rich countries, even though it's overwhelming popularity with voters of all political parties. Again, here are people who work and sacrifice away the public eye.

Like our hearts beating, the caregivers, healthcare workers, military, first responders and essential workers keep things working and keep saving lives. They will continue doing so even though they are taken for granted, bump-bump-bump. But in the richest country in the world, is that the way we really want to do it? Wouldn't it be much better to take good care of them, which in turn takes good care of us?

As for our caregivers, there is a definite way to help, right now. We can call our senators at the U.S. Capitol Switchboard, (202) 224-3121, and demand support for home-based caregiver services and for family leave. There's a historic bill before them to support these now. I say this without regard for party: about 70 percent of us will end up needing long-term services and supports, and age and disability will come for all of us in a truly bipartisan fashion. Tell them to support these essential caregivers. Tell them to have a heart.