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The MS Wire

@themswire.bsky.social
279 followers 12 following 58 posts

I’m a retired Associated Press broadcast journalist who writes about multiple sclerosis and has lived with MS for 45+ years.

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The MS Wire @themswire.bsky.social · 21/08/2026
Multiple sclerosis is expensive. This collaboration between patient assistance funds may help you handle some of those costs. #multiplesclerosis #disability #medicalcosts #patientassistance edtobias.substack.com/p/a-new-assi...?
edtobias.substack.com
A New Assistance Fund Aims to Take Some of the Bite Out of Some Medical Costs
Multiple sclerosis (MS) can be expensive.
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The MS Wire @themswire.bsky.social · 28/07/2026
Want to see a neurologist about your MS? You might have a wait. edtobias.substack.com/p/waiting-fo... #multiplesclerosis #healthcare
edtobias.substack.com
Waiting for a neurology appointment? Some get it faster than others.
How long are people waiting to see a neurologist after being referred by a primary care physician?
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The MS Wire @themswire.bsky.social · 15/06/2026
When you travel on wheels advance planning is a must. open.substack.com/pub/edtobias...
open.substack.com
I need to see you, doctor, but can I get through your door?
“Will 3 or 4 steps at our entrance bother you?”
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The MS Wire @themswire.bsky.social · 12/05/2026
Doctor Amazon wants your business. Is this for you? edtobias.substack.com/p/would-you-...
edtobias.substack.com
Would you order your healthcare from Amazon?
My wife and I ordered some nasal spray from Amazon the other evening.
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The MS Wire @themswire.bsky.social · 14/04/2026
Sometimes you have to wonder about an MS study. edtobias.substack.com/p/is-coffee-...
edtobias.substack.com
Is coffee as good as medication to handle MS fatigue?
Coffee, anyone?
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The MS Wire @themswire.bsky.social · 05/03/2026
Checking your blood to check your MS open.substack.com/pub/edtobias...
open.substack.com
Checking your blood to check your MS
They soaked me in a hot tub to help diagnose my multiple sclerosis (MS) back in 1980.
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The MS Wire @themswire.bsky.social · 26/01/2026
I test walked the Cadense shoe. Did it help me walk better? edtobias.substack.com/p/is-cadense... #MS #multiplesclerosis
edtobias.substack.com
Is Cadense the shoe that will help me walk better?
I’m always on the lookout for a new style of shoe, one that can handle the unique demands of a person with multiple sclerosis (MS).
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The MS Wire @themswire.bsky.social · 14/01/2026
Does it trouble you that the FDA has put the brakes on approval of tolebrutinib for treatment of multiple sclerosis? edtobias.substack.com/p/bad-news-f...
edtobias.substack.com
Bad news for the MS BTK inhibitor tolebrutinib
FDA concerned about severe liver injuries
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The MS Wire @themswire.bsky.social · 06/11/2025
Artificial intelligence has been moving into healthcare. Can it used to make MRIs shorter and more descriptive? edtobias.substack.com/p/shorter-be... #multiplesclerosis #disability #AI #healthcare
edtobias.substack.com
Shorter, better MRIs possible with an AI assist?
Anyone living with multiple sclerosis (MS), or who is in the diagnostic process, has been through a magnetic resonance imaging (MRI) scan; probably several.
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The MS Wire @themswire.bsky.social · 26/09/2025
Forty-five MS years and still counting! open.substack.com/pub/edtobias...
open.substack.com
Still hangin' in after all these years
I was supposed to be dead by now, or so statistics said.
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The MS Wire @themswire.bsky.social · 16/08/2025
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
open.substack.com
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.
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The MS Wire @themswire.bsky.social · 25/07/2025
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
nationalmssociety.org
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.
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The MS Wire @themswire.bsky.social · 18/07/2025
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...
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The MS Wire @themswire.bsky.social · 16/07/2025
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...
open.substack.com
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.
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The MS Wire @themswire.bsky.social · 30/05/2025
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...
open.substack.com
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.”
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The MS Wire @themswire.bsky.social · 12/05/2025
This MS research left me wondering "why?" open.substack.com/pub/edtobias...
open.substack.com
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...
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The MS Wire @themswire.bsky.social · 02/05/2025
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
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The MS Wire @themswire.bsky.social · 21/04/2025
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...
nytimes.com
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.
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The MS Wire @themswire.bsky.social · 26/03/2025
Zing, went some MS pain. #multiplesclerosis #pain open.substack.com/pub/edtobias...
open.substack.com
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.
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The MS Wire @themswire.bsky.social · 08/02/2025
Thanks for the repost
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The MS Wire @themswire.bsky.social · 08/02/2025
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/...
washingtonpost.com
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.
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The MS Wire @themswire.bsky.social · 31/01/2025
Love this game. Play it almost every day.
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The MS Wire @themswire.bsky.social · 23/01/2025
FDA issues warning about rare, but serious allergic reaction to Copaxone, Glatopa (glatiramer acetate) #MS treatments #multiplesclerosis www.fda.gov/safety/medic....
fda.gov
Copaxone, Glatopa (glatiramer acetate): Drug Safety Communication
Treat immediately if symptoms worsen or do not go away shortly after an injection
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The MS Wire @themswire.bsky.social · 21/01/2025
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.
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The MS Wire @themswire.bsky.social · 21/01/2025
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
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The MS Wire @themswire.bsky.social · 20/01/2025
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-...?
nationalmssociety.org
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.
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The MS Wire @themswire.bsky.social · 17/01/2025
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
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The MS Wire @themswire.bsky.social · 16/01/2025
Tolebrutinib on a fast track towards final FDA approval to treat #SPMS. #MS themswire.com/tolebrutinib...
themswire.com
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.
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The MS Wire @themswire.bsky.social · 16/01/2025
MS study of potential SPMS treatment seeking participants in US. www.nationalmssociety.org/how-you-can-...?
nationalmssociety.org
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.
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The MS Wire @themswire.bsky.social · 18/12/2024
Where did you find that great image??
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The MS Wire @themswire.bsky.social · 17/12/2024
Anyone with #ms who rides a scooter tried a do-it-yourself check-out lately? themswire.com/real-people-...
themswire.com
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?
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The MS Wire @themswire.bsky.social · 15/12/2024
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.
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The MS Wire @themswire.bsky.social · 15/12/2024
Tolebrutinib, an experimental BTK inhibitor, gets FDA’s Breakthrough designation to treat non-relapsing Secondary Progressive #MS www.sanofi.com/en/media-roo...
sanofi.com
Press Release: Tolebrutinib designated Breakthrough Therapy by the FDA for non-relapsing secondary progressive multiple sclerosis
Tolebrutinib designated Breakthrough Therapy by the FDA for non-relapsing secondary progressive multiple sclerosis Designation is based on positive results from the HERCULES study in adults with...
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The MS Wire @themswire.bsky.social · 13/12/2024
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...?
connect.trialscope.com
Citeline Connect
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The MS Wire @themswire.bsky.social · 03/12/2024
This is why EXPERTS are needed to lead the FDA, CDC, NIH, and HHS. www.nytimes.com/2024/11/26/o...
nytimes.com
Opinion | I Ran Operation Warp Speed. I’m Concerned About Bird Flu.
Avian influenza might mutate to enable human-to-human transmission.
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Reposted by The MS Wire
Tim Coetzee, PhD @timcoetzee.bsky.social · 02/12/2024
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/...
neurology.org
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...
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The MS Wire @themswire.bsky.social · 02/12/2024
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.
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The MS Wire @themswire.bsky.social · 01/12/2024
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...
themswire.com
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.
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The MS Wire @themswire.bsky.social · 22/11/2024
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...
themswire.com
"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. ...
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The MS Wire @themswire.bsky.social · 21/11/2024
Sign up for a webinar discussing three #MS clinical trials that were presented at last September’s ECTRIMS conference. www.msif.org/webcast-clin...
msif.org
Global webcast: what we are learning from clinical trials - MS International Federation
Global webcast: what we are learning from clinical trials
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The MS Wire @themswire.bsky.social · 21/11/2024
Thanks for the boost!
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The MS Wire @themswire.bsky.social · 18/11/2024
Two new products to help folks with #MS and other #disabilities get around. themswire.com/a-new-scoote...
themswire.com
A new scooter and chair help MS mobility - The MS Wire
Two new mobility products may help people with multiple sclerosis get more places without having to walk. Here's a quick look at them.
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The MS Wire @themswire.bsky.social · 18/11/2024
Well, I’m one. Diagnosed in 1980! Now I’m retired and writing about my #MS. My blog is www.themswire.com and my book is “The Multiple Sclerosis Toolbox.” Always willing to share thoughts and experiences.
themswire.com
The MS Wire
The MS Wire - News, info and tips for living with multiple sclerosis
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The MS Wire @themswire.bsky.social · 18/11/2024
Nothing to do with government pressure. It’s totally the bottom line. Fewer newspapers = fewer AP customers = less $$ for AP. And providing high-quality, unbiased news from around the world isn’t cheap. Support the press and subscribe to a newspaper.
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The MS Wire @themswire.bsky.social · 18/11/2024
As an AP retiree this is very troubling. What the world needs now is bolstered, not diminished, straight-up news organizations like the AP. But, it is a business with a bottom line. What a shame that the pool of news consumers, and the newspapers that have been AP’s customers, has shrunk.
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The MS Wire @themswire.bsky.social · 18/11/2024
Just came onboard. Been living with MS since 1980! Retired broadcast journalist who now writes about MS: www.themswire.com and a little book: “The MS Toolbox.” Always glad to chat and to share.
themswire.com
The MS Wire
The MS Wire - News, info and tips for living with multiple sclerosis
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The MS Wire @themswire.bsky.social · 18/11/2024
Yes, it can really make a big difference in your quality of life. Since I started using one over twenty years ago I’ve been all over the world, for work and for pleasure.
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The MS Wire @themswire.bsky.social · 18/11/2024
I’m lucky to have two, a standard scooter for around the neighborhood and a little TravelScoot to throw in the back of the car or take on a plane. It’s only 35 pounds and folds up like a baby stroller.
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The MS Wire @themswire.bsky.social · 17/11/2024
When I was at AP I used to get my hair cut at a place on L Street called The Grooming Lounge. All of its staff was trained to say that. So I started saying it back to them. They got the point, but orders are orders.
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The MS Wire @themswire.bsky.social · 17/11/2024
themswire.com/is-it-time-t... #multiplesclerosis #disability #chronicillness
themswire.com
Is it time to get a mobility scooter? - The MS Wire
A cane, a scooter, and other mobility devices have been a huge help to me as I live my life with MS. Why do some people hesitate to use them?
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