MS can start years before it shows itself.


Radiologically isolated syndrome is captured when someone has a scan and when they get the scan back, it looks like MS. This study looks at the length of time it took for the MS to show itself, this occurred in about half the cases. Should we treat at that time. If it was something you have to take all the time I would not do it would you. however if offered a shot of cladribine as a one off in the hope it reduces the 50% risk, I may have a good think about it. Alemtuzumab a good treatment but it comes with too much baggage for this option and it would not fit the NHS criteria….This is one of the reasons why the Australians have got it some much more right than the UK, in that the state does not shackle its Neurologists. In the COVID era cladribine could have been a great option for the high efficacy drug options, 10 weeks at home even if you weren’t vulnerable, you could have drug delivered by Courier, no hospital visits, very limited monitoring. But no….inflexible NHS England and the ABN with blinkers, destining people onto CRABS and you know what I think about them…..right….I try not to think about them:-). Remember I’m not a neuro so I don’t have to think about them.

Radiologically Isolated Syndrome: 10-Year Risk Estimate of a Clinical Event.Lebrun-Frenay C, Kantarci O, Siva A, Sormani MP, Pelletier D, Okuda DT; 10-year RISC study group on behalf of SFSEP, OFSEP.Ann Neurol. 2020 Jun 4. doi: 10.1002/ana.25799. Online ahead of print.

Objective: We have previously identified male sex, younger age, and the presence of spinal cord lesions as independent factors that increase the 5-year risk for evolution from radiologically isolated syndrome (RIS) to multiple sclerosis. We investigate here risk factors for the development of a clinical event using a 10-year, multi-national, retrospectively-identified RIS dataset.

Methods: RIS subjects were identified according to 2009 RIS criteria and longitudinally followed as part of a worldwide cohort study. We analyzed data from 21 individual databases from 5 different countries. Associations between clinical and MRI characteristics, and the risk of developing a first clinical event were determined using multivariate Cox regression models.

Results: Additional follow-up data was available in 277/451 RIS subjects (86% female). Mean age at RIS diagnosis was 37.2 y (range:11-74 y) with a median clinical follow-up of 6.7 years. The cumulative probability of a first clinical event at 10 years was 51.2%. Age, positive CSF, infratentorial lesions on MRI, and spinal cord lesions, were baseline independent predictors associated with a subsequent clinical event. The presence of gadolinium enhancing lesions during follow-up was also associated with the risk of a seminal event. Reason for MRI and gadolinium enhancing lesions at baseline did not influence the risk of a subsequent clinical event.

Interpretation: Approximately half of individuals with RIS experience a first clinical event within 10 years of the index MRI. The identification of independent predictors of risk for symptom onset may guide education and clinical management of individuals with RIS

COI: Multiple

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  • Always very curious about this. How long is it lurking! Does this paper insinuate it can be up to 10 years before clinical presentation? That’s mad.

    • 50% were up to 10 years maybe it would be 50% at 20years….however is it that mad? Migration studies suggest the risk of MS is related to the intrinsic risk of your birthplace….but this is before the age of 15. As diagnosis is often not until late twenties and early thities what is going on in those 15 years? Next up we have the Argentinian 18 year olds…they all do a test when they leave school go forward a few years to see you got MS and then rewind to the test. Those destined to get MS in the future did worse…Chance occurance? or something spooky:-)

      • Really interesting…I had Bell’s palsy when I was about 15 and then again about 10 years later. I was eventually diagnosed with ms at 32 after optic neuritis and a relapse where I lost function in one side. I’ve always wondered if my ms started from when the Bell’s palsy did?

  • Can there also be isolated neuropathic symptoms that, in isolation, seem to be odd random events but with the benefit of hindsight may have been pre-diagnosis indicators?

    Thank you.

  • For me mild MS symptoms presented at 49, post menopause
    The only clear MS type incident I remember from before that happened when I was 6 years old: one arm went limp for maybe a week

  • Hi MD – would not being able to walk or run for long distances – for example, your legs ceased, unable to work properly until rested, then a necessity to sit and start up again, be an indication?

    Also, could long term stress and extremely overwhelmingly stressful situations also cause your body to react – again, e.g. – if you felt overwhelmed and stressed that you felt electrical buzz along with an anxiety attack (hyperventilating and emotional over load) – could these be indications too?

    I have had some might say, an unusually stressful life (haven’t we all in the modern day – that’s why I think us Brits & residents have taken to lock-down so well!) – could this all contribute to an attack on the central nervous system. If you have had certain conditions as a child, gotten better, but much like COVID-19, the conditions have left scars and eventually show themselves in the form of MS – later on in life.

    Thanks for your incite and we can make a change to how the NHS make decisions – if they listen to us patients more and understand our needs all boil down to ‘TIME’ and if they leave things to fester and people aren’t valued when they are unwell, for whatever reason – the availability for DMDs can be altered. If it is cost, have you seen how much money is wasted around the world and how people really do care about their health and would be willing to up their NI contributions, if they knew it would go to the NHS and look after the people who have paid into the system – not people that abuse it and use it, or when they can afford to go private or haven’t paid a penny into it. Our NI number is unique to us and we can use this to check our viability. That’s my rant for today!

    Keep up the good work and I hope you all keep well and safe from any of these dreadful diseases – including MS – I can say, that it is awful you feel dreadful every-day and your body is no longer working properly. Even your brain starts to play tricks on you, cognitively, emotionally and your general disposition. Alien body transplant to a one that has aged to 110!

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