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The-MS-guide Riding across Canada For MS. Follow at . Support, join and donate to the cause. Follow at www.strava.com/atheletes/rc4ms

14/06/2026

I broke a rib yesterday. In my own spare room. And the reason why might change how you see every fall you've ever had.

When you fall with MS, you call yourself an idiot. I did, lying on the floor with a cracked rib and a mule-kicked kidney.
But it wasn't carelessness. My brain sent the instruction it's sent for 35 years, for the body I used to have. The body I've got today didn't follow. The foot didn't fire. That's not stupidity. That's MS. Your brain's still running the software for the old you.

In my head I'm still Superman. I haven't stopped reaching. But sensible me has signed up to a free balance workshop with .gretchen

Don't let MS shrink you. Just grab the thing that doesn't move next time.

12/06/2026

If a close relative has MS, you know your risk is higher. But what about other autoimmune conditions — diabetes, thyroid disease, rheumatoid arthritis?
Turns out, they count too.

Professor Gavin Giovannoni has just updated his MS risk calculator to version 3.0 — and family history of other autoimmune diseases is now included. Research across 30 studies shows the elevated risk is modest but real, with an odds ratio of 1.4 to 2.0.

The calculator isn't a crystal ball, and it hasn't been validated in large populations yet. But it's one of the most serious attempts to quantify MS risk in individual people — and it's free to use.

Full details and the direct link to the calculator are in my bio.

31/05/2026

A major trial just published in The Lancet has shown that ocrelizumab can protect hand function and slow disability progression in people with advanced PPMS, including wheelchair users previously excluded from research entirely. The 41% reduction in risk of losing hand function is the number that matters. Because hands are independence.

This trial happened because people with MS told researchers, loudly, that hands matter more to them than walking.

Researchers listened.

The unsalvageables are salvageable.

Link in bio for the full video.

28/05/2026

Two days post lumbar puncture. I'm home. I'm fine. Here's the version nobody usually tells you.

Was it comfortable? No. Was it fun? Absolutely not. But I've stubbed my toe harder. Done by someone who knows what they're doing, right needle, right technique, and two days on: not a single headache. Just a bit of an ache in my back, which, frankly, seems reasonable.

The cerebrospinal fluid is now in the lab, being analysed for neurofilament light (NfL), a marker for nerve damage over time. That's what this was all for.

The day after hit harder than the procedure itself. Felt like I'd been kicked in the lower back. Paracetamol, ibuprofen, one quiet day. Two days on, it's almost gone.
Not nothing. But manageable. And knowing that in advance makes a difference.

Results update to follow.

26/05/2026

Lumbar punctures have a terrible reputation. The name alone puts people off. But done properly, with the right needle and the right aftercare, it's around twenty minutes of mild discomfort at most.

The headache everyone fears? Real risk, but largely preventable. Thirty minutes lying flat afterwards makes a significant difference. I've got meetings this afternoon and I'm planning to make them.

I'm having this because my neurologist needs to look at proteins in my spinal fluid. Markers that can show what my MS is doing right now, not just what a scan suggests.
Part 3 coming later today. Real time, no polish, just what actually happens.

Not medical advice. Talk to your own MS team about what's right for you.

26/05/2026

I'm on the platform. Train to London. Lumbar puncture today.
I've had MS for 35 years and my MS has been acting up. This is how we find out what's actually going on inside my brain.
I know that phrase, lumbar puncture, puts a lot of people off. The name sounds worse than the procedure. Done properly, with the right needle and the right aftercare, it really isn't the horror story people expect.
I'm taking you with me today. Pre-procedure. Post-procedure. Real time. No script, no polish, just what actually happens.
If you've been told you might need one of these, or you're trying to understand why your neurologist is suggesting it, this series is for you.
Part 4, coming later, will cover the results and what they tell us about MS brain activity. That's the one that gets really interesting.
This is lived experience, not medical advice. Talk to your own MS team about what's right for you.

23/05/2026

Choosing an MS drug isn't just a clinical decision. It's a decision about your life.

The effectiveness question matters. So do the risks. But there's another question most people don't think to ask: how much do you want MS treatment to sit inside your daily life?

Ocrevus infusions, Kesimpta injections at home, subcutaneous options. Same broad mechanism. Very different lived experience.

And both are long-term B-cell-depleting treatments, which means a serious conversation about infection risk and immune suppression that shouldn't be brushed aside.
The real question is this: which effective drug gives you a treatment life you can actually live with?

Always a decision to make with your neurologist. This is information, not advice.

15/05/2026

A stable MRI should reassure you.

But it should not silence you.

PIRA means progression independent of relapse activity: worsening that is not explained by obvious relapses. It is not a magic word that proves every symptom is progression, but it is a useful word to bring into clinic if your function is changing.

Do not just say, ‘I feel worse.’

Say: ‘Could we talk specifically about PIRA, and how we are measuring progression beyond relapses and new lesions?’

Subscribe to youtube.com/ for longer MS videos.

07/05/2026

MS fatigue is not always about doing too much.

Sometimes it is the cost of compensation: concentrating harder, walking more carefully, hiding brain fog, masking symptoms, and trying to look normal.

People see you functioning. They do not see what functioning costs.

26/04/2026

How lovely and relaxing.



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