Living with multiple sclerosis (meervoudige sklerose) (MS) is a daily balancing act — physically, emotionally, and mentally. And in that journey, information can empower, but it can also overwhelm.
Recently, a situation reminded me why we must keep having honest conversations about treatment adherence.
A person with MS (details withheld for privacy) made the difficult mistake of reading too much into the pharmacy-issued information leaflet of their chronic medication. Out of fear, they adjusted the dosage on their own for almost a year. They continued believing the lower dose was “safer”.
The result: five new lesions on the brain.
What makes this especially heartbreaking is that, for years, on the correct dosage and under specialist supervision, this person had:
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zero side effects,
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zero new lesions, and
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stable, well-managed MS.
This is not an isolated story — it’s simply one example of a much wider challenge.
In MS, self-adjusted dosing can be dangerous. The treatment schedules and dosages recommended by neurologists are the result of global evidence, safety data, clinical trials, and long-term patient outcomes. Changing this without medical guidance can undo years of stability.
Why I’m sharing this
Because MS patients deserve to feel informed — but also safe.
Because pharmacies and information leaflets don’t tell the whole clinical story.
Because fear can make people second-guess even what has worked well for them.
And because we need to talk more openly about the importance of staying in communication with your MS specialist.
What we can all take forward
✔️ Ask your neurologist or MS nurse if anything on the leaflet worries you
✔️ Never change your dose without medical guidance
✔️ MS treatments are designed to prevent damage you cannot feel happening
✔️ Trust the partnership you have with your treating team
Most importantly: You are not alone in navigating MS.
Safe guidance exists. Evidence-based care exists. And support exists — every step of the way.