A diagnosis of benign MS is a clinical one and heavily weighted towards the absence of relapses. As clinicians, we rely first and foremost on your feedback on how many relapses, if any, you’ve had recently. However, this method of assessment is imprecise and can lead to a false understanding of the true events – what’s called a type II error in statistics. Martin Duddy (at the Royal Victoria Infirmary) published results from a postal survey showing that 46% of MSers failed to report a relapse in the past, whilst 28% even failed to report a recent attack! (http://multiple-sclerosis-research.blogspot.com/2014/05/the-uk-experience-of-relapse-on-dmt.html)
In clinic if I’m super fortunate I can get collateral history from our MS specialist nurses, but again this may be a distilled version of what truly happens! In an MS nurse survey, UK, 2015, in response to the question: ‘When a patient relapses, at what stage would you typically refer him/her for a review of DMT?’ only 18% said that they would refer patients for review of their DMTs after one relapse on treatment, whilst 72% would wait for 2 or more relapses – food for thought wouldn’t you say? ( see figure below).
The key is in the accuracy of recall. There are now several free apps on the market to track symptoms, which will hopefully provide a more accurate assessment of disease activity:
- SYMPLE symptoms Journal and Health Diary – Apple, general symptom diary
- SYMTRAC – Apple & Android, specifically designed for MS (funded by Novartis)
- SYMPTOM TRACKER – Android, general symptom tracker, monitors path to wellness
(NB- these apps are for informational purposes only and should not be used in place of medical assessment).
Therefore, improved awareness of MS symptoms will make misdiagnosis of benign MS a thing of the past…
Conflicts of interest: several in our group for Symtrac.