Page 18 of 41 FirstFirst ... 8161718192028 ... LastLast
Results 171 to 180 of 401

Thread: Rch4

  1. #171
    Forum Member nunhead_man's Avatar
    Join Date
    Jul 2017
    Location
    London
    Posts
    444
    Quote Originally Posted by WeirdTim View Post
    Andy, with all due respect why are you trying to discredit a charity that has helped so many of us PALS with no charge? .
    Firstly I'm not sure it's a charity - they say that on the site but there seems to be no evidence of it.

    Secondly I am very pleased that you think that is helping"so many of us PALS".

    Even if it is only giving a positive feeling about life I'm sure it is extending that life
    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. #172
    Forum Member
    Join Date
    May 2017
    Posts
    20
    Andy,

    As I said before it is not a registered charity. It just gives the drug away for nothing. See Oxford dictionaries definition of charity
    'The voluntary giving of help, typically in the form of money, to those in need.'
    Not sure why everyone keeps getting hung up on the fact.

    I personally know quite a few people who have the same results as my wife who is on RCH4. She has been taking for two years and progression has halted. The couple of times that we have been late on taken the drug due to travelling we notice twitching symptoms return (she never has twitching or cramps anymore). Her two medically identical triplet sisters and mother all died from the disease in under 18 months and my wife was told the same would happen to her. Placebo and 'feel good' can only last a couple of months at the most..not over two years.

    So when I read your 'Even if it is only giving a positive feeling about life I'm sure it is extending that life' quote, it does the drug RCH4 a severe injustice. I feedback my actual experience here on this forum, to inform others and maybe help others make decisions of their own based on my wifes real experiences. Your quotation though is not based on any experience. I know you are quite welcome you your opinion but it does frustrate users like us, as we are completely convinced that this drug is saving our lives and are completely grateful for receiving the drug for no money. We are trying to get this drug through the next set of FDA trials so everyone can benefit from it.

    If you have any doubts that it is working come and meet my wife and see what you think. She was in a wheelchair to move around any distance just over two years ago! We have just been visiting Sydney this weekend and she walked everywhere including a lap of the botanical gardens!

  3. #173
    Forum Member TIANDB's Avatar
    Join Date
    Jun 2018
    Location
    Middle England
    Posts
    25
    Well they have my details, I have to try to arrest my slippery slope.
    Will await reply and hope I will be acceptable.
    Had my Doctor visit today and showed him my email reply, He cannot endorse obviously but can see how I would want to try.
    Onward's TIANDB

  4. #174
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    1,916
    Not much to lose, Kevin ;

    All the best.

    Love Terry

  5. #175
    Forum Member TIANDB's Avatar
    Join Date
    Jun 2018
    Location
    Middle England
    Posts
    25
    Worth to look at Gerti's words towards the bottom of the page on this link. It seems like RCH4 has helped her some..

    https://www.patientslikeme.com/forum...cs_sort=recent

    https://www.patientslikeme.com/members/556803
    Last edited by TIANDB; 2nd July 2018 at 22:12. Reason: ADD

  6. #176
    Forum Member
    Join Date
    Nov 2017
    Location
    USA
    Posts
    19
    Andy, let me get this straight. You took a confidential email from the charity, posted it and then have issues with someone sharing your post on a public forum with the charity??? Seems a little odd.

    You did no one including yourself ant favors. Now a very long time user of RCH4 is booted off this forum and their feedback can't be posted for others......including yourself. From what I read your diagnoses isn't a sure thing yet.....congratulations and enjoy life!!! Please don't try to take mine and others opportunities away for a life..yes...a life by disregarding RCH4, the Charity or others who have actually been diagnosed. Thank you.

  7. #177
    Forum Member TIANDB's Avatar
    Join Date
    Jun 2018
    Location
    Middle England
    Posts
    25
    Quote Originally Posted by WeirdTim View Post
    Andy, let me get this straight. You took a confidential email from the charity, posted it and then have issues with someone sharing your post on a public forum with the charity??? Seems a little odd.

    You did no one including yourself ant favors. Now a very long time user of RCH4 is booted off this forum and their feedback can't be posted for others......including yourself. From what I read your diagnoses isn't a sure thing yet.....congratulations and enjoy life!!! Please don't try to take mine and others opportunities away for a life..yes...a life by disregarding RCH4, the Charity or others who have actually been diagnosed. Thank you.
    A 2nd to this. It is hard enough on folks with such conditions without bitterness spoiling the chance for a little extra time with loved family members. The biggest percentage of MND sufferers do not have the chance of any extra time and for most it is sadly short.
    Any possible better treatment should be given a chance and the honesty of those taking the risk should be applauded.
    I hope to add a little and report all honestly here so that others may consider if beneficial ?
    Great respect and advise so far in my dealings
    My location is listed and my story line all so true sadly . I hope and try for miracles for us ALL.
    TIANDB

  8. #178
    Forum Member nunhead_man's Avatar
    Join Date
    Jul 2017
    Location
    London
    Posts
    444
    Quote Originally Posted by WeirdTim View Post
    Andy, let me get this straight. You took a confidential email from the charity, posted it and then have issues with someone sharing your post on a public forum with the charity??? Seems a little odd
    Hi Tim - you are not being helpful

    Firstly there is no doubt about my diagnosis. I remain pleased as does my neurologist that my initial damage caused by motor neurone disease does not seem to have changed very much over three years apart from some weakening and I wait with trepidation further developments.

    In case you have not seen my posts my neurologist works for King's College Hospital London as a senior research scientist and has some funding from the Motor Neurone Disease Association for his work on working out the causes of the disease.

    Secondly, I was posting as an individual to what I thought was a private forum about the difficulties I was having with obtaining a drug from a public organisation that I understood was helping some pals and that I wanted to try.

    I found the organisation providing this material unhelpful and I was posting to this private forum to explain what had happened to me. This included abrupt instructions to supply files with a particular file name and inaccurate assumptions made by the organisation about how I'm dealing with the disease and how I run my life. Not the least asserting that my diagnosis was wrong.

    So I'm entirely entitled as I understand it to speak in this forum about my experience in the expectation that I'm posting in private.

    And I understand by doing this I burned my bridges with the suppliers of RCH. And this worries me as such behaviour suggests a certain approach to treatment which I do not understand.

    I can understand, for example, why obese people may be denied treatment until they lose the weight that is in part causing their difficulties but I do not understand why somebody in the early stages of the disease which has no effective treatment and no real understanding of cause should be denied something that helps some pals.
    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"

  9. #179
    Forum Member
    Join Date
    Feb 2017
    Location
    Holme
    Posts
    18
    Hello
    Why isn't Rch4 available on the NHS?

  10. #180
    Forum Member Barry52's Avatar
    Join Date
    Mar 2012
    Location
    Newark on Trent
    Posts
    740
    Hi Chrisp,

    Rch4 has not undergone the trials necessary to get approval in the USA and Europe.

    Barry
    Iím going to do this even if it kills me!

Tags for this Thread

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •