The MS Wire

Still hangin' in after all these years I was supposed to be dead by now, or so statistics said.

Forty-five MS years and still counting!
open.substack.com/pub/edtobias...

When is it time to say "when" for an MS treatment? Using disease modifying therapies to treat older people, like me, who have multiple sclerosis isn’t a simple choice.

Is there an age at which there’s no point in using an #ms disease modifying treatment? Here’s my opinion. open.substack.com/pub/edtobias...
#multiplesclerosis

Empowering people affected by MS to live their best lives The National Multiple Sclerosis Society exists because there are people with MS. Our vision is a world free of MS.

A new study to measure MS fatigue using an app is looking for participants, and - get this - the upper age limit is 89! I wish other researchers would include multiples clerosis seniors.

www.nationalmssociety.org/how-you-can-...
#MS #disability #multiplesclerosis

A clinical trial of an oral med to counter #multiplesclerosis spasticity is recruiting. 48 centers spanning half a dozen countries. edtobias.substack.com/publish/post...

Using BrainHQ to try to improve my MS brain BrainHQ is a web-based program designed to improve the brain's processing speed. I gave it a test to see if it might help some MS symptoms.

BrainHQ is a web-based program designed to improve the brain's processing speed. I gave it a test to see if it might help some of my #multiplesclerosis symptoms. #disability #cognition

open.substack.com/pub/edtobias...

Can lab animals be replaced by AI? The headline on the news release that dropped into my in-box recently read: “FDA Announces Plan to Phase Out Animal Testing Requirement for Monoclonal Antibodies and Other Drugs.”

The FDA is starting to replace lab animals with AI. Is it the right thing to do? #multiplesclerosis #disability #research open.substack.com/pub/edtobias...

This MS research left me wondering "why?" Have you ever looked at a multiple sclerosis (MS) research paper and thought “why in the world did they waste time and money on that?” I read one of those reports the other day, about MS fatigue and l...

This MS research left me wondering "why?"
open.substack.com/pub/edtobias...

Ham radio friends - I'm excited to report the second addition of my guide to Morse code operating, "DITS and DAHS," is now available on Amazon as both a paperback and an e-book. Lots of good info about learning the code and improving your CW operating. www.amazon.com/DITS-DAHS-AB... #hamradio #morse

On New Website, Trump Declares Lab Leak as ‘True Origins’ of Covid The White House has thrown its weight behind the lab leak theory, an idea that has divided intelligence agencies.

Want solid info about COVID-19? You can’t get it from the covid dot gov website anymore. www.nytimes.com/2025/04/18/s...

Did I find a simple solution to my zinging MS pain? It was 3:20 in the morning when my leg jolted me awake, zinging with pain.

Zing, went some MS pain. #multiplesclerosis #pain open.substack.com/pub/edtobias...

Thanks for the repost

NIH cuts billions of dollars in biomedical funding, effective immediately The move halts a large slice of money for most universities and research institutions virtually overnight, imperiling vital research in everything from cancer to heart disease.

I have no doubt that #multiplesclerosis research will be among the research that will take a hit from this. If you are in the U.S. it’s time to call your members of Congress and tell them to put an end to this craziness. www.washingtonpost.com/health/2025/...

Love this game. Play it almost every day.

Copaxone, Glatopa (glatiramer acetate): Drug Safety Communication Treat immediately if symptoms worsen or do not go away shortly after an injection

FDA issues warning about rare, but serious allergic reaction to Copaxone, Glatopa (glatiramer acetate) #MS treatments #multiplesclerosis www.fda.gov/safety/medic....

I can’t tell from your posts if MS is one of your illnesses. If it is, I’d suggest you try to find an MS specialist, who would be much more likely to understand your fatigue.

I’m really sorry about fatigue spoiling things. I’ve been living with it for over 40 years with #ms. It impacted activities with our son and now our grandkids. Are you using any meds, such as modafinil? Have you considered a lightweight scooter for excursions ? #multiplesclerosis #disability

Empowering people affected by MS to live their best lives The National Multiple Sclerosis Society exists because there are people with MS. Our vision is a world free of MS.

I didn't get past the initial screening for this survey - maybe I'm not anxious or nervous enough - but you might be interested. #multiplesclerosis #ms
www.nationalmssociety.org/how-you-can-...?

There are some very good tips, here. Even though I just use a scooter, there have certainly been times when the chatter and activity has been “over my head.” And don’t get me started on the people glued to their mobile devices while walking on a sidewalk. #multiplesclerosis

Tolebrutinib nears the MS approval finish line - The MS Wire Tolebrutinib is a disease-modifying therapy on the brink of being approved to fight multiple sclerosis. Fingers crossed that it is.

Tolebrutinib on a fast track towards final FDA approval to treat #SPMS. #MS themswire.com/tolebrutinib...

Empowering people affected by MS to live their best lives The National Multiple Sclerosis Society exists because there are people with MS. Our vision is a world free of MS.

MS study of potential SPMS treatment seeking participants in US. www.nationalmssociety.org/how-you-can-...?

Where did you find that great image??

Real people at the check-out make things easier for me - The MS Wire Don't you hate self check-out? Shopping while riding my scooter, I certainly do. Do people who design these things ever think about access?

Anyone with #ms who rides a scooter tried a do-it-yourself check-out lately?

themswire.com/real-people-...

True. Sanofi says the liver concerns in a small number of patients appeared early in treatment and were handled without needing further care. And, of course, some serious side effects have been reported with many of the high efficacy DMTs in use today. They all require a risk/benefit discussion.

Tolebrutinib, an experimental BTK inhibitor, gets FDA’s Breakthrough designation to treat non-relapsing Secondary Progressive #MS
www.sanofi.com/en/media-roo...

A vaccine to protect against norovirus? A Phase 3 clinical trial is seeking volunteers and, for a change, the researchers including older folks.

connect.trialscope.com/studies/1f82...?

Opinion | I Ran Operation Warp Speed. I’m Concerned About Bird Flu. Avian influenza might mutate to enable human-to-human transmission.

This is why EXPERTS are needed to lead the FDA, CDC, NIH, and HHS. www.nytimes.com/2024/11/26/o...

Temporal Dynamics of Plasma Neurofilament Light in Blood Donors With Preclinical Multiple Sclerosis | Neurology Neuroimmunology & Neuroinflammation Background and ObjectivesMultiple sclerosis (MS) is a CNS disease, characterized by demyelination, inflammation, and neurodegeneration. Recent advances in technology allow measurement of the axonal da...

An important new study on the earliest indicators of #MS. More evidence of disease activity before initial symptoms. Emphasizes the need to start looking for tools to detect MS at it's earliest points.

www.neurology.org/doi/10.1212/...

So glad you’ve come over here. I left X about a year ago for my personal posts and a couple of weeks ago for my #MS #MultipleSclerosis posts.

A Hug is Nice, but Not This One - The MS Wire Not everyone has heard of the MS hug, but it's not hug you want. It's a painful MS symptom, and not everyone knows about it.

Many people report the hug feels like a heart attack and, if in doubt, it’s always best to treat the symptoms as if it is. Here’s something I wrote that has a lot more info. themswire.com/a-hug-is-nic...

"Bracing" Yourself for MS - The MS Wire (This post first appeared as one of my columns on www.multiplesclerosisnewstoday.com) One of the MS blogs that I follow is written by Jen, who lives in England.  It’s called Tripping Through Treacle. ...

Walking aids do help. It can be something simple such as a brace (technical name ankle foot orthosis or AFO). Or, something electronic and expensive.) Here’s something I write several years ago. You can search my blog for more themswire.com/bracing-your...