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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

04/09/2026

More than twenty years before the first symptom, something was already showing up in people's blood.
A study published in Brain this month has put the sequence in order. Swedish researchers went back to blood frozen in national biobanks years before anyone knew who would go on to develop MS. Nine hundred and eighty one people who did, matched against twelve hundred and seventy eight who didn't.

Antibodies against the Epstein Barr virus in its active phase, more than twenty years out. The latent marker at fifteen. Antibodies against one of the body's own proteins at nine. A marker of nerve damage at seven.

Two things the headlines will drop. These are group averages, not a clock you can put yourself on, and there's no test here to ask for. And the study can't prove the virus caused any of it.

01/09/2026

Your scan is stable. You are not.

That contradiction is one of the most common things people with MS tell me, and it usually gets treated as a misunderstanding on the patient's part.

A new study looked at donated brain tissue from 291 people with MS and compared it against genetic groups already linked to disease severity. The group with the worst clinical outcomes did not have the most inflammation. The group with the heaviest immune-related genetic load hard more smouldering lesions and less disability.
Two processes running at once, and we only routinely count one of them.

This is post-mortem tissue, so
me numbers are small, and the same paper still found smouldering lesions to be a strong marker of severity. It's not an argument against treating inflammation. It is a reason to stop treating a clean MRI as the end of the discussion.

Check out dominishadbolt.substack.com
24/08/2026

Check out dominishadbolt.substack.com

22/08/2026

If EBV causes MS, where's the vaccine? Here's the honest position this week.

A big melanoma trial has just reported. A personalised mRNA vaccine plus an immunotherapy drug beat the drug on its own. First result of its kind at phase three. Topline only, no paper yet.

Why that matters to us: the T cells that should keep EBV quiet in MS look worn out. Vaccinate someone and you may be giving orders to a workforce that's stopped listening. The melanoma result suggests pairing a vaccine with a drug that wakes those cells up can work.

The catch is that waking them up is also one of the ways autoimmune disease starts.

Moderna is running a phase two EBV vaccine study in MS, recruiting people diagnosed within two years. It's mainly a safety study.

Real step forward. Slow one.

MSCommunity

13/08/2026

I've covered EBV here before. I'm back on it because a new study made it more complicated, and the headlines have already flattened it.

Since 2022 the working assumption has been that you can't get MS without catching the Epstein Barr virus first. Ten million US military recruits, almost no exceptions. It's why EBV vaccines and EBV-targeted therapies are being trialled at all.

A new Canadian study, drawing on lab records for sixteen million people, found a small group whose MS showed up before their first positive EBV test.

Some coverage is calling that the end of the theory. The researchers aren't. They've listed the ordinary explanations themselves, and there's a fourth about antibody testing that almost nobody mentions.

Fampridine. CAR-T. Now this. Same shape every time.

05/08/2026

Thirty degrees, and you're planning your day around the windows rather than anything enjoyable.

This isn't the standard heat advice. Your MS nurse has that covered. This is what I actually do in a small flat in England, where air conditioning isn't a thing and the heat gets in overnight.

Work out which way the sun crosses your home, then shut those windows and pull those curtains before it arrives. A summer breeze picks up heat from the ground, so open windows don't always help.

Two fans, neither staying put. One drawing cooler air in, one pushing warm air out. A fan in the middle of a room mostly just moves hot air around.

Water. Boring, endlessly repeated, and it genuinely changes how tired I feel. I've stopped arguing with it.
Cold things made in advance. A wetted synthetic cloth, wrung out and frozen, round the neck. A water bottle filled and frozen, wrapped in a tea towel, under hot-feeling feet. Wrap it properly if your sensation is reduced, because you may not feel damage happening.

Do all of it before you're hot. Afterwards isn't cooling down, it's recovery.

26/07/2026

Fampridine has been approved in England. You still cannot get it, and the reason has nothing to do with your MS team.
This was not a NICE decision. NICE still says do not offer it. NHS England approved it by a different route, and that route has no funding deadline attached to it. That is the whole reason for the wait.

Before your hospital can hand you a tablet, fampridine has to go onto a national approval system, your trust has to sign it off, pharmacy has to stock it, and someone has to find clinic time to time you walking.
Northern Ireland approved it in 2023. It is still not available everywhere.

Part 2 is on my profile: who qualifies, and how the drug can be taken back off you. If you think this drug is for you, watch both.

26/07/2026

If fampridine helps your fatigue, your hands and your thinking, but not your walking speed, they will take it off you. That is the licence, not cruelty.

You need to be between four and seven on the disability scale. Four is walking about five hundred metres without a rest. Seven is five metres being beyond you. Below four and you are outside this policy, whatever your walking is actually like.

You are out if you have ever had a seizure, or if your kidneys do not clear the drug well. Some medicines rule you out, so take your list.

Then four weeks. Timed walk before, timed walk after. No improvement, it stops. Then reviews at three to six months and every six to twelve months after that.

It can also make you dizzier. Faster is not always safer.

Part 1 is on my profile, on why it is not in your hospital yet.

24/07/2026

Your legs stop working, and you haven't even had a hot bath. Sounds like a relapse. It probably isn't.
Here's something most people don't know. Sixty years ago, doctors used a hot bath as a test for MS. You'd lie in warm water, and if your symptoms showed up or got worse, that counted as evidence. They stopped in the eighties when scanners came along.

The reason it worked is the reason this heatwave still catches you out, no bath needed. Warm up a nerve that's lost its coating, even by half a degree, and the signal starts to stumble. So an old symptom comes back. But nothing new is being damaged. Cool down and it settles.
It's called Uhthoff's phenomenon.

Now you've got a word for it.
In this weather, take the cool option.

17/07/2026

Your report says they've found something, and it has nothing to do with your MS. Now your brain won't let it go.

There's a name for this: an incidental finding, or incidentaloma. It just means "a thing found by accident". It says nothing about how serious it is.

We see these more than most people, and it isn't because MS causes them. It's because we get scanned far more often. More scans, more chances something random shows up: a small cyst, a benign lump, a blood vessel built a bit differently.

The reassuring part? Nothing gets ignored. A radiologist reads every scan. Your neurologist puts any finding in context. Most need a note in your file, or a repeat scan to confirm they're stable.

General info from a fellow patient, not medical advice. Bring your results to your MS team.

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