#179: Multiple Sclerosis without the noise. Dominic Shadbolt on 35 years with MS, treatment and real patient involvement

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/