Barts-MS rose-tinted-odometer: ★
In the last 2 days, you will have seen from my posts and the discussion that it has generated that there is a problem with the current MS lexicon. We need to get some form of nomenclature that addresses the confusion about what MS is as a disease and at what is the state and/or stage of MS for individuals with the disease. Knowing how to refer to people with MS is important for several reasons. It affects how they are managed, it has implications for what treatment pwMS are eligible for and it has wider implications for the MS community. The latter refers to clinical trials and for getting MS DMTs licensed for treating MS.
What best describes your MS?
Active radiologically isolated syndrome
Inactive radiologically isolated syndrome
Active clinically isolated syndrome
Inactive clinically isolated syndrome
Active relapsing-remitting MS
Inactive relapsing-remitting MS
Relapsing multiple sclerosis
Active relapsing multiple sclerosis
Inactive relapsing multiple sclerosis
Active relapsing stable multiple sclerosis
Active relapsing worsening multiple sclerosis
Inactive stable relapsing multiple sclerosis
Inactive stable worsening relapsing multiple sclerosis
Active secondary-progressive MS
Inactive secondary progressive MS
Active stable secondary-progressive MS
Active worsening secondary-progressive MS
Inactive stable secondary progressive MS
Inactive worsening secondary progressive MS
Active primary-progressive MS
Inactive primary progressive MS
Active stable primary-progressive MS
Active worsening primary-progressive MS
Inactive stable primary progressive MS
Inactive worsening primary progressive MS
Early-stage MS
Late-stage MS
Advanced MS
Smouldering MS
MS with hidden disabilities
MS with hidden progression
MS with silent progression
MS with progression independent of relapses
Benign MS
Malignant MS
Indolent MS
Highly-active MS
Rapidly-evolving severe MS
Etc…
I am interested to know if all this makes sense to you? I am sure I have also left some descriptors off the list. If I have please let me know.
CoI: multiple
Twitter: @gavinGiovannoni Medium: @gavin_24211