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What does living with multiple sclerosis for 35 years teach you about treatment, disability, information and the role MS should have in your life?
In this episode, I talk with Dominic Shadbolt, founder of theMSguide and PatientSignal, about his long MS journey – from years of denial to becoming an outspoken patient advocate. We discuss his experience with several disease-modifying therapies, his thoughts on HSCT, increasing disability and the importance of staying physically active. Dominic also shares why misinformation makes him angry, what genuine patient involvement should look like and why shared decision-making needs both informed patients and responsible healthcare professionals.
Above all, his message is clear: take MS seriously, stay informed – but don't let it become your whole identity.
In this episode, we talk about- Dominic's life and almost 35 years with MS
- moving from denial to patient advocacy
- his journey through several MS treatments
- what he wishes he had known about HSCT earlier
- coping with increasing mobility limitations
- misinformation, miracle claims and trustworthy MS information
- communication between people with MS and healthcare professionals
- genuine patient involvement versus "patient washing"
- shared responsibility in treatment decisions
- AI, MRI and the challenge of predicting individual MS progression
- Dominic's work with theMSguide and PatientSignal
- CAR-T cell therapy and hopes for the future of MS treatment
- why MS should remain behind you rather than define your life
Read the full interview: https://ms-perspektive.de/en/179-dominic-shadbolt/
Find Dominic online: https://themsguide.com/ https://dominicshadbolt.substack.com/
Related episodes: Aaron Boster – 10 red flags when to change your neurologist: https://ms-perspektive.de/en/004-aaron-boster/
aHSCT in MS with Prof. Roland Martin: https://ms-perspektive.de/en/40-ahsct-roland-martin/
AI-assisted MS care and the CLAIMS project: https://ms-perspektive.de/en/172-claims/
CAR-T cell therapy for MS with Prof. Barbara Willekens: https://ms-perspektive.de/en/163-car-t-cell-therapy/
Find Dominic online: theMSguide: https://themsguide.com/
Substack: https://dominicshadbolt.substack.com/
LinkedIn: https://www.linkedin.com/in/tmsg/
What would you like to leave our listeners with?Dominic Shadbolt: The world has not ended. I know that for many people it feels as though it has. But focus on the things you can do rather than only on the things you cannot.
I have been highly athletic throughout my life. Now MS is taking away the function of my right leg. It feels as though my right leg is no longer part of the team. And I simply have to deal with that.
There is a phrase I heard from a Belgian neurologist that I really like. MS is like your shadow. You should keep it behind you. If it comes into view, do something about it. But until then, keep it behind you.
I think that is a great way of looking at it. Take the disease seriously. Get informed. Get treated. Pay attention when something changes. But do not make MS the whole of your life.
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See you soon and try to make the best out of your life, Nele
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