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Thread: Rch4

  1. #281
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    Quote Originally Posted by originalthought View Post
    Sportingmac, you have appeared elsewhere as a nay-sayer. You do not take the drug so nothing for you to be interested in or be afraid of.

    They are an unpaid charity and they make clear that they make no claims whatever.

    There is separate website run by PALS themselves who take RCH4
    http://rch4als.com
    RCH4 has the highest number of votes in the history of ALS Untangled
    http://www.alsuntangled.com/open.php

    From PALS own reports on the Internet
    Originalthought - I am being realistic and pragmatic. I can make a spreadsheet say whatever I want - quite easy really. There are variants of MND - some fast progressing some slow progressing. Which variant are your spreadsheet from?

    I live in hope that a cure can be found but realistic enough to have reservations that it will work on everyone. Not everyone gets cured from cancer!

    But you haven't answered my questions - so come on - what are the specialisms of he doctors? and what research have they published? and who is the Pharma who makes this under licence?

    Time for you to post evidence not opinion.

  2. #282
    Forum Member Terry's Avatar
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    Hi Sportingmac;

    I try to stay off this thread because I don't know much about it.

    Quote Originally Posted by originalthought View Post
    Sportingmac, you have appeared elsewhere as a nay-sayer. You do not take the drug so nothing for you to be interested in or be afraid of.
    Not quite sure what a Nay-sayer is so I can't comment on that. I don't like people putting labels on people. How can anyone say that you are not interested in possible cures for Mnd on the Mnda forum, what a ludicrous remark.

    I've always valued your straight forward posts.

    We just hope it is proven to make a difference, like you and many other valued members of the forum I am highly skeptical.

    Love Terry

  3. #283
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    Well said Ellie, my sentiments exactly.
    Love Jerry x

  4. #284
    I'm all for free speech, but I'm wondering if it is worth asking MNDA to consider banning this thread for the reasons Ellie states so eloquently.

    Doug

  5. #285
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    Dear all,
    I am taking RCH4 since July 2018.
    I was diagnosed with ALS in March 2017 and in 1 year my evolution has been declining rapidly. In May 2018, I had a collapse, getting the tracheostomy and mechanical ventilation for breathing, weight 44 kg.
    After starting RCH4, my condition got better, gaining weight (over 8 kg), can walk, can type. My score is not high but it is stable.
    I am very grateful to Charity group and I wish that more patients to have the chance to get RCH4 drug.
    This is my chart:
    Chart.jpg
    Attached Images Attached Images

  6. #286
    Forum Member Lynne K's Avatar
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    I've decided to delete my post and stay out of this thread. Lynne
    Last edited by Lynne K; 26th August 2019 at 06:34.
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  7. #287
    Forum Member Ellie's Avatar
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    IONEL,

    You have joined this Forum simply to tell us all how wonderful this elusive product is, knowing full well that not one person reading your effusive post will be able to source the product because it is simply not available - you are being beyond cruel in taunting us.

    I urge you, and the others like you, who join the Forum only to post in this thread, to take a good look at your conscience before you write one more word on this topic. You may as well be extoling the virtues of unicorn milk to us and it is not acceptable to treat us with such contempt.

    Please stop.

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

  8. #288
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    I agree with you Ellie.

  9. #289
    Forum Member Gillette's Avatar
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    Very well said, Ellie.
    Dina


    Trying to keep positive, but not always managing.

  10. #290
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    Fully support your stance Ellie. Reflecting my views on this topic.

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