The-MS-guide

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.

25/04/2026