Tuesday, 9 June 2015

Under reporting of relapses makes benign MS a flawed argument

Benign MS or MS without disease activity does not exist, really? You may say that it's easier to disprove a point than to prove a point, but you can also prove a point first to disprove a point! And so here is my point...

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).



From Multiple Sclerosis and disease modifying therapies: results of two UK surveys on factors influencing choice, 2015, volume 11(1), pp 7-13.

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:
(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.

9 comments:

  1. Relapses are tricky ... I have over 30 lesions on MRI and only had 2 very clear relapses (optic neuritis and diplopia) over the course of 10 years.
    I do get an occasional sensory problem or a twitching muscle - not enough to bother anybody with it as the problem usually resolves within a week without any intervention ... and anyway the usual response form MS nurse is "wait and see".
    But "benign MS" is a misnomer and a wishful thinking kind of problem on the part of both patients and neurologists. There is no such thing as "benign" damage to CNS. Some lesions speak louder than others, but all affect something...

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    1. The concerning feature is that we may simply become used to things and therfore stop reporting them.

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  2. When my eyesight deteriorated I told my MS Specialist Nurse who advised me to keep an eye on it!
    It did return to baseline after about a week luckily.

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  3. When I was diagnosed there were no personal computers, doctors used to write notes. Now our notes go missing and when you arrive in clinic our notes are missing. If you don't see the same clinician you're lost. Each time a new hospital system is introduced, patient's records disappear. I've been told I had benign MS even though I was in and out of hospital after onset. Will this technology be around in 30 years? I don't think so. There will be new kids on the block, bringing their new systems, with little knowledge of the previous data and we start all over again.

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  4. If something is useful, even technology it sticks. Look at the EDSS for instance, despite its many failings (and the list grows yearly) we still use it. The randomness of the health system technologies cannot be guaranteed, however! But what ever app/method you use if you (not the doctor, not the MS nurse, not you friend/husband/wife/partner/neighbour) it will be of some use. What would be particularly useful for me is a summary of events app which gives it on a graph for instance.

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    1. I've used symtrac and it's OK but not 100 per cent useful, as, although it lists, for example cognitive symptoms, the graphic of the body doesn't take account of this. Similarly fatigue. It's a right pain if it concerns altered sensations in both legs as this needs to be entered twice. It's actually easier for me to keep a diary note on my iPad, then graph it out, if appropriate. But, for me, I definitely agree it is beneficial to record this in some way and keep as a reference.

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    2. How do you define a relapse?

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    3. Not convinced, technology will be defunct before MS. You're going to need costly expertise to make sure data isn't lost. What about those of us that have problems with our sight and hands and speech?

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    4. Anon: "how do you define a relapse" -hopefully the info from these continuous measures will provide a better measure of what is relapse.
      Anon:"...what about those of us that have problems with our sight, hands and speech?"-a good point and thinking laterally, the thing about technology is that sky's the limit; there are already software readers available which use joysticks, mice and eye tracking to enable this.

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