The-MS-guide

07/04/2026

You know something's been wrong. But when you finally sit down with your neurologist, the words don't come — or you remember everything you forgot to say on the drive home.
That's not a you problem. That's a tracking problem.
Part 1 of my Be Heard series is about one thing: recording your symptoms in a way that makes your appointment work for you. Simple, consistent, and impossible to dismiss.
Parts 2 and 3 will follow.

Follow so you don't miss them.

01/04/2026

You described every symptom clearly. And they looked at the scan and said: there's nothing there that would explain that.

That moment — driving home, wondering if you were losing your mind — is one of the most common and least talked-about experiences in MS.

Your neurologist wasn't lying. But there is a form of MS progression that our best imaging technology cannot always see. Your symptoms may simply be ahead of what the scan can currently show.

You are not imagining it. You are not dramatic. You are not difficult.

Save this. Share it with someone who needs to hear it.

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23/03/2026

If you've just been diagnosed with MS, you're probably terrified of ending up in a wheelchair.
Good. Hold onto that fear — because it might be the thing that saves you.

In 1993 when I was diagnosed, that fear was completely justified. There were no drugs to treat MS. None. The wheelchair was a realistic outcome for a lot of people.
But this isn't 1993.

The data is clear: get onto the highest-efficacy treatment you can, as early as you can — and you can significantly change the likelihood of that wheelchair becoming your future.

I've always taken high-efficacy treatment. I walk with a cane. Given where I started, I'll take that.
You're starting at the front. Don't waste it.
Talk to your neurologist. Ask specifically about high-efficacy treatment and what it means for your long-term outcomes. 🦯

ChronicIllness InvisibleIllness NeurologicalDisorder AutoimmuneDisease MSLife HighEfficacyTreatment TreatToTarget DisabilityPrevention MSResearch PatientEmpowerment MSWarrior BrainHealth DMT MSFighter ChronicIllnessAwareness

05/03/2026

Send this to someone who needs to understand

MS fatigue is not tiredness

it has a name, a mechanism, and it is absolutely not in your head.

Sharing this one widely because the misunderstanding does real damage.

01/03/2026

My MRI results are in and I have conduction delay in my right leg. So good combined with bad.

But nonetheless, I got outside today and did some exercise albeit not as much as I used to be able to do. Never give up.

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27/02/2026

Why I've been quiet: The expert patient reality check

MRIs ✓
ECTRIMS paper ✓
Two trial panels ✓
8-min documentary ✓
Job applications ✓
Functioning right leg ✗

Turns out MS doesn't care about your to-do list.

Not gone, just moving slower ATM.

MSAwareness DisabilityAdvocate RealTalk

13/02/2026

13/02/2026

10/02/2026

MRI day in London. Head + spine.

If you’ve got an MRI booked and you’re anxious, this is for you. I filmed the whole day: getting into town, the Underground, the hospital, and the scanner experience itself, because the unknown is usually the worst bit.

Personal side: I’ve not felt quite right for months, so getting proper imaging feels like a step towards clarity. But the bigger point is reassurance: MRIs are loud and weird, not “painful”. You’ll be supported, and you can get through it.

A few things that often help:
• Tell the team if you’re claustrophobic or anxious before you start
• Ask about ear protection and whether you can have music
• Use steady breathing and a simple mental focus (counting, a playlist in your head, anything)
• Remember: you can usually signal at any time if you need a pause

Oh, this is also for the ASSIST-MS study using cool by to read the scans.

If this helps, share it with someone who’s got an MRI coming up, and subscribe for the longer, calmer explanations on YouTube: youtube.com/

04/02/2026

Ocrevus (ocrelizumab) vs Tysabri/Tyruco (natalizumab):
a national Danish registry study (2018–2023) found no clear difference in relapses, PIRA, or new MRI inflammatory activity after adjustment.

Translation:
for many people, effectiveness is very similar, and the decision comes down to fit factors like JC virus status/PML risk, monitoring burden, vaccine timing, infusion schedule, prior treatments, and clinician experience.

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