The-MS-guide

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

04/01/2026

If you have MS, 2026 isn’t about a miracle drug.
It’s about better signal.

Relapses are late.
MRIs are infrequent.

And a lot of MS damage happens quietly, in between.
Blood biomarkers like neurofilament light chain and kappa free light chains are starting to change how decisions get made — not replacing MRI, but sharpening it.

The hard part isn’t the science.
It’s knowing how to raise this in clinic without sounding awkward, confrontational, or dismissed.

I’ve broken that down properly on Patreon — exact wording, when it makes sense to ask, and where biomarkers mislead if you over-interpret them.
Link in bio.

Neurology MSAdvocacy LivingWithMS

04/01/2026

The Swedes call it the dorstockmilla (Spelling and punctuation fail - mea culpa) or the doorstep mile.

With MS it is hard to get going, I get it. This is what I tell myself over and over until I am out.

Fresh air, sunlight, just being outdoors is invigorating. Try it!

Amazing display from the this evening. I can't get the image out of my head of a rogue scientist slipping the bat signa...
01/01/2026

Amazing display from the this evening.

I can't get the image out of my head of a rogue scientist slipping the bat signal filter over the light when no one is looking.

27/12/2025

I have had my Cadense shoes for 4 weeks now.

I can sum them up on one word.

24/12/2025

MS is a bu**er. Caught a cold and it has amped up my symptoms to 11.

Activity is so important I forced myself out for a short walk.

see for excellent weights guidance and inspiration.

Have a wonderful Christmas ⛄🎁

20/12/2025

If you’re on an anti-CD20 MS treatment (Ocrevus, Kesimpta, Briumvi), you’ve probably been told the serious infection risk is minimal.

That’s not the full picture.

Most people do fine.
But a meaningful minority drift into higher risk as IgG antibodies fall — often without symptoms at first.

Real data, not anecdotes:
• ~7% serious infections in long-term follow-up
• Risk clusters with low IgG, disability level, and other health conditions
• The trend matters more than reassurance

This isn’t medical advice.
It’s about asking better questions — before repeated chest infections or UTIs become “normal.”

I am given Ng away the longer version of that s on my Patreon. If you want the longer breakdown + monthly live Q&A, that’s on my Patreon (link in bio).
Comment “Q&A” if you want this discussed live.


I'll try it so you don't have to 🥳
20/12/2025

I'll try it so you don't have to 🥳

19/12/2025

Here’s a practical 4-question clinic script to take to your neurologist when MS labels start getting messy.

It forces clarity on what’s being measured, what’s driving change, and what the plan is.

The 5th question (the accountability one) is on patreon.com/tMSg + monthly live Q&A.

mri pira rehab physio fatigue patientadvocacy mscommunity chronicillness

17/12/2025

If you’re on an anti-CD20 MS treatment (Ocrevus, Kesimpta, Briumvi), you’ve probably been told the serious infection risk is minimal.

That’s not the full picture.

Most people do fine.
But a meaningful minority drift into higher risk as IgG antibodies fall — often without symptoms at first.

Real data, not anecdotes:
• ~7% serious infections in long-term follow-up
• Risk clusters with low IgG, disability level, and other health conditions
• The trend matters more than reassurance

This isn’t medical advice.
It’s about asking better questions — before repeated chest infections or UTIs become “normal.”

This episode is FREE on my Patreon.

If you want the longer breakdown + monthly live Q&A, that’s on my Patreon (link in bio).
Comment “Q&A” if you want this discussed live.


16/12/2025

PML = rare brain infection linked to JC virus reactivation when immune surveillance is reduced.

In MS, it’s discussed most with natalizumab, which is why there’s monitoring (check-ins, MRI, and sometimes JCV antibody blood tests).

Full deep-dive + member Q&A (submit questions) on Patreon — your support helps fund the time and care that goes into these.

16/12/2025

I love the fact that my Cadense shoes are so easy to put on.

15/12/2025

MS can feel embarrassing for a very specific reason: symptoms create uncertainty, and our brains hate social uncertainty.

The longer, more cerebral version + the monthly live Q&A is on my Patreon (link in bio). Comment “Q&A” if you want me to break this down into walking/speech/bladder/cognition separately.

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