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Thread: Rch4

  1. #111
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    Life is short:
    I don't doubt that the medication MAY slow progression.
    Unfortunately it is not endorsed in the UK.
    So it is your fortune you live in an unnamed country that endorses access.

    As or your post: It is cryptic, elusive, wi

  2. #112
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    I started on our RCH4 in December 2016. There is no doubt in my mind that it has slowed the progression even though I am getting weaker. The best news from this was that I had my pulmonary test a month ago and it actually went up to 95%. That shocked me and I can only believe that it was the RCH4 ! I am disappointed that some people believe this is a scam because I know it's working for me....

  3. #113
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    AnnieLou:

    Its not a scam. The jury is out. However worth a try given the paucity of treatments.
    it is not available in the UK.
    I am sure if it were many on this forum would try.
    Forget the 'scam' narrative. It just is not endorsed for use in the Uk.
    I assume you are in the USA?

    Charles

  4. #114
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    Hi Annie and welcome to the forum;

    It's good to hear that some things have improved and you think that it has slowed your progression.

    What type of Mnd do you have and when was you diagnosed?

    How long before you were diagnosed did you have problems?

    How do you take RCH4?

    Best wishes, Terry

  5. #115
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    Hi Charles

    I'm confused. If a person's doctor in the UK is willing to give the green light to go ahead and try the drug wouldn't they now have access to it if they go thru the approval process of the 'charity' and get acceptance to have the drug?

    I had thought the challenge was getting a doctors approval to try it, but maybe I'm wrong.

    CCxox
    .

  6. #116
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    CC:
    You are correct.
    None of the MND specialists recommend or prescribe it in the UK. They only prescribe Riluzole.
    Some have had it approved by GPs but it is not common practice.
    It is not on any treatment protocol in the UK.

    Hope that clarifies

    Charles

  7. #117
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    Yes Charles it did, thank you for clarifying.

    xox
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  8. #118
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    Quote Originally Posted by njm View Post
    Leo:
    I am very pleased for your mom.
    Which country do you live in?

    Charles
    Thank you NJM, I am in the US

  9. #119
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    ccinjersey, No,ALS worldwide has not apologized for alleging that RCH4 has stated that RCH4 is sodium chloride (salt). That is totally unture. They also said they have seen no benefit. Again unture. They ALS wordwide are trying to sell their own stuff. Just look at all the forums including this one and see what Pals say about RCH4 and its giving for free. My mom's score is now higher than when she started on RCH4 18 month ago.

  10. #120
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    Not untrue leo123 as stated in prior post ALS Worldwide thought it was a different drug in question, and apologized for his confusion.

    I also find it very odd, and interesting that after being on this forum for six years there is suddenly an amount of random Americans popping up on this thread to bash ALS Worldwide and promote RCH4 a drug with no clinical data to back up these claims of its 'proven' effectiveness.

    I also find it odd that the 'Charity' responsible for creating, manufacturing, and distributing this drug for free remains 'silent' when they have a drug that is a treatment for MND/ALS as being stated by those popping up on this thread claiming it actually slows down their progression of this illness ??????

    The only information on this thread about this mysterious Charity came from nrmnd who stated the Charity is seeking investors so they can continue to produce this drug, and give it out for free for those in need of it.

    I'm as baffled by this drug as the others on this thread that find it all questionable as well, and can only hope and pray it is the real thing and will become easily assessable for all that want to give it a go.

    I'm not a spokesperson for ALS Worldwide, and have only been on their website. For those interested you can go to their site as well, and decide for yourself if you think they are a legitimate organization with the intent of reaching out to offer their assistance to those living with this illness, and their families.

    All the best to you leo123 I hope your Mom's score continues to improve.

    CCxox
    .

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