Monday, 26 October 2015

ResearchSpeak: predicting disease progression

Predicting disease progression #ShiftMS #ResearchSpeak #MSBlog

"The following is another MS Report as part of our collaboration with Shift.ms. The topic addresses the issue of prediction; in this case progression." 



CoI: this work has been generously funded by the Wellcome Trust, Thank You. 

5 comments:

  1. According to the MS Trust life expectancy for pwMS is about six to seven years less than the general population.
    https://www.mstrust.org.uk/a-z/life-expectancy

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  2. that fits with http://multiple-sclerosis-research.blogspot.com/2015/05/clinicspeak-survival-in-ms.html

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  3. The second time I saw my neuro we had to discuss about treatment. I told him: "I prefer not to take monoclonal antibodies as some of their side effects might kill me. MS does not affect my life expectancy in a dramatic way, so I prefer another treatment". He stopped me to say something as true as inhumane: "On a broad average MSers live less than normal people". thank you. I was initially dumbstruck. And then I thought about it. I do not know exactly how old he is but I would say 45ish. I just turned 30 and after one or two days I found what I should have said: "I will happily repeat your words at your burial. After all I am one of your patient. A patient 15 years younger than you. So "on a broad average" you will be dead 10 years before me even if I have a life expectancy 5 years shorter than yours".
    More seriously it seems to me that people die from the consequences of MS (sometimes
    provoked by its treatment), not from MS itself. So let's finish on a quote:
    "L'absence des medecins est un souverain remède"

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  4. MS treatment is not about saving you from death....it is about saving as much of your brain and function as possible so that you can have a reasonably good life in your 30's, 40's, 50's, 60's and so on... Chances are that you will outlive your Neuro but in what state? Did you know that death from side effects of monoclonal antibodies is extremely small. But loss of brain function and function from not treating MS adequately is extremely high. I know what choice I am going for!!!

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  5. The question was not if I want to take or not a treatment (I am not stupid and I am treated with Tec). Yes I might outlive my neuro and even if I am lucky I might do it in a better state than my neuro. Sorry neuros, but this profession does not prevent you from degenerating. You are right, the probability of death from the monoclonal antibodies are small. But hey, if there is a treatment that is a little less effective but has much less dangerous side-effects better pick this one, no? Personally I am going to switch to Cladibrine which is less dangerous and more effective given my neuro. So you see I am a reasonable person.

    But my neuro should have stayed silent. What I would have like to hear is nothing instead of what he said. We are all going to decay and die. My neuro and you too included. Even if you are super healthy today, at some point you are going to die. If you are lucky this will be quick but most likely you will loose your cognitive abilities and strength before (MS or not). I do not think you enjoyed reading these sentences. So please do not inflict it to others. I am not saying we should hide the truth to people, but a little empathy always helps and there are better ways of saying these things.

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