Q&A 59: Will tolebrutinib change the willingness of neurologists to diagnose smouldering MS?

He told me to forget about smouldering MS and that I also don’t have secondary progressive MS. He told me to carry on as best I can. Am I going mad?

Case study

I am a 42-year-old woman who was diagnosed as having MS shortly after I turned 30. I was initially treated with interferon-beta and later switched to natalizumab. When I became JCV positive, I was started on fingolimod. I have been free of relapses, and I am told my MRI has been stable with no new lesions. However, over the last few years, I have been getting worse with severe bowel and bladder problems and increasing difficulty walking long distances due to a weak right leg and right foot drop. I also suffer from cognition problems, which affect me at work. My neurologist tells me I am stable, and when I told him that I thought I had smouldering MS, he poo-pooed it, saying the concept of smouldering MS is very controversial and that not everyone accepted it. He told me to forget about smouldering MS and that I also don’t have secondary progressive MS. He told me to carry on as best I can. Am I going mad? I am getting worse. Why won’t my neurologist acknowledge my deterioration in functioning?

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Prof G’s answer

This person’s story is sadly widespread, and it is apparent from her brief description that she has no evident inflammatory disease activity (NEIDA) but has superimposed smouldering MS disease activity (NESDA)…..