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Thread: Rch4

  1. #361
    Forum Member nunhead_man's Avatar
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    Good afternoon Doblett

    I see you are now back on the forum after being thrown off after you declared information about me that I shared here outside this forum against the rules thereof.

    If I find you been sharing any more information about me outside this forum, I will find some way of throwing the book at you.
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

    "Things turn out the best for people who make the best of the way things turn out"

  2. #362
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    Hi, Our mum was diagnosed in Nov 2017 and begun using RCH4 in Jan 2018. She hasn't used any other ALS drugs. Her condition has stabilised since commencing RCH4 and there have been no side effects.
    We as a family are extremely grateful to the charity that supplies RCH4 free of charge along with ongoing support.
    Our hope is that the charity gains the recognition they deserve, to bring this treatment option to the market and help other PALs dealing with this devastating disease.

    Below are her latest ALS scores.ALSFRS-R 09-19.png

  3. #363
    Forum Member Terry's Avatar
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    Hi Noow17,

    Pleased to hear that your mum is still getting the drug OK because I was led to believe that Dobett couldn't get it.

    Love Terry

  4. #364
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    Hi all,

    Neater Robo-arms are out of stock - sadly for me it will be a 4~5 week wait.

    In other news: I have always doubted the veracity of ALSFR-S scales since a final number is used to assess the progress of ALS. I was doodling along with my usual research on ALS/MND when I came across a more detailed variant that breaks the final number down to specific area - respiratory et etc.

    https://www.mdcalc.com/revised-amyot...rs-r#use-cases

    Wondering if any other on the forum think it more useful to see the breakdown and improve a prognosis - note the original research document is from 1999.

    I think it a much better scale than an extract from a spreadsheet..

    What does everyone think?

    Kind regards

    Chas

  5. #365
    Forum Member Terry's Avatar
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    Hi Chas,

    Sorry to hear about the arms being out of stock. There was one advertised but it was adapted for a small person. I doubt that it is still available but I could check if you have short arms.

    Love Terry

  6. #366
    Forum Member Ellie's Avatar
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    Chas, I may have misread your post, but that ALSFRS-R scale is the scale being used, not only by the posters on this thread, but in MND Clinics and by other healthcare professionals too. (ALSFRS-R = ALS Functional Rating Scale Revised)

    As someone who has completed many, many ALSFRS-R sheets over the years, my issue with the ALSFRS-R is that it is a subjective, self-reported system, with no scope for nuance in the blunt scoring system.

    That said, there has to be some standardised way of, for example, having inclusion/exclusion criteria for clinical trial participation, so the ALSFRS-R is often one of the criteria used for enrolment.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  7. #367
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    Thanks for that Terry. However I am - was - 6ft - and longish arms.

    I will make enquiries though about modifications.

    Kind regards

    Chas

  8. #368
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    Quote Originally Posted by Ellie View Post
    Chas, I may have misread your post, but that ALSFRS-R scale is the scale being used, not only by the posters on this thread, but in MND Clinics and by other healthcare professionals too. (ALSFRS-R = ALS Functional Rating Scale Revised)

    As someone who has completed many, many ALSFRS-R sheets over the years, my issue with the ALSFRS-R is that it is a subjective, self-reported system, with no scope for nuance in the blunt scoring system.

    That said, there has to be some standardised way of, for example, having inclusion/exclusion criteria for clinical trial participation, so the ALSFRS-R is often one of the criteria used for enrolment.

    Love Ellie.
    Exactly my views too Ellie. I also checked with my neurologist in Sheffield - they still use the version I tagged.

    Kind regards

    Chas

  9. #369
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    Sportingmac said

    I have always doubted the veracity of ALSFR-S scales since a final number is used to assess the progress of ALS. I was doodling along with my usual research on ALS/MND when I came across a more detailed variant that breaks the final number down to specific area - respiratory et etc.

    He then correctly directs us to the more modern ALSFRS-R scale

    https://www.mdcalc.com/revised-amyot...rs-r#use-cases

    which is highly accurate in consideration of the fact that it is the only validated system. There is no validated biomarker ("test") to measure MND.
    Basically this is exactly the scale that the RCH4 charity uses for everyone's monthly monitoring report. Actually they have added further datum points to their form which is also dynamic in that it also encompasses predictive analysis etc. which builds over time.

    From the `Net
    Measuring the progression: The ALSFRS-R score

    As the ALSFRS-R score is a subjective observation, it will likely be scored differently by any two different people. It is said that the PALS must be scored by a specialist medical professional - but this is not the case.
    See the evaluation study in the accuracy of on-line self reporting https://www.tandfonline.com/doi/full...68.2011.633268 (Journal Amyotrophic Lateral Sclerosis Volume 13, 2012 - Issue 2)


    In fact the precise ALSFRS-R score is not particularly relevant. What matters is the CHANGE in the score over exactly the same time periods.
    Provided that the SAME person (e.g., the patient or a care giver) does the scoring every month over a long time, the submitted change in data is very accurate. Further, scoring by the same person over extended time ensures elimination of patient or carer bias as the submitted data would rapidly exceed the envelope of credibility.


    Again from the `Net, the patients own reporting is very consistent. In this case for the RCH4 drug which was given to everyone for free but the charity has no money now.
    als-2-year-117 chart.jpg

    The ALSFRS-R score does not reflect loss of neurons or other subtle changes, but someone rightly said that if the ALSFRS-R score never changed then we would all die from extreme old age or something else. Speaking as a medical doctor, I must accept that is true.

  10. #370
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    Hi Originalthought,

    Thank you for point. However - it remains a subjective method.

    Also- the results depend largely on the type of motor neurone disease - ALS versus PLS versus Bulbar onset versus limb onset. Each would have a different trajectory.

    There has been research into objective testing. The research used two different methodologies: MRI scans and EMG results. The EMG determines the number of neurones used to move a selected muscle and the size of the neurones . Using these two objective tests it was shown how much degradation was occurring in the patient.

    I was part of that research.

    Harvard University picked up the ongoing research - sadly I have yet to see its outcome - I declined my participation through my lack of mobility to get to Sheffield. Ongoing research for me.

    Hope that helps explain my position.

    Meantime I wish you all the best in your research.

    Kind regards

    Chas

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