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Thread: Rch4

  1. #141
    Hey Charles

    Thank you so much for your pm

    I had my second opinion back in 2008 at the National Neurology Hospital in Central London. I am terrified of getting worse, and just wanted to know if at this stage pls could change into als.

    I know pls is a slow form, lately I have trouble with my breathing, if I liť flat in bed I get out of breath like I have been running. My consultant have been carrying out regular sleep studies which I do at home, but now I am waiting to go into hospital to do a sleep study.

    It's like every couple of years something changes. Do you understand why I am worried?

    Your advise would be appreciated,

    Best Wishes
    Carol

  2. #142
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    carol:
    I sent you another pm.

    Charles

  3. #143
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    Rch4 is working very well for my mother, she has improved a bit on her monthly score in the last 20 months.
    I will post my mom's latest score sheet as soon as I can figure out how to do it.

  4. #144
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    Leo:
    I am pleased for your mum. Long may it continue.
    Please do post info here. Its helpful.
    Are you in the UK?
    Charles

  5. #145
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    Hello, diagnosed with ALS in April 2017. Started taking RCH4 two months ago. No side effects and no measurable progression. Charity has been professional and very helpful.

  6. #146
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    Since I am new here, let me explain my road to RCH4.

    When I was diagnosed I was told by the University of Wisconsin Madison there is nothing to be done and I'd die in 3-5 years. Depression and anxiety set in badly. So my neurologist at the time prescribed me drugs for those conditions. No real help and it got worse. They never offered me a ALS clinic or support groups. After I asked several times they scheduled me for a ALS clinic, two months out. Two weeks before the ALS clinic I had to see my primary doc. He couldn't believe that I was prescribed the anxiety and depression drugs. Turns out the mixture of the two increased depression and the anxiety drug hindered breathing, my major symptom. Then a few days later I received a call cancelling my first clinic because the neurologist forgot about his vacation!

    So the UW was fired by me. In the meantime I had been reading and reading. ALS Worldwide is literally 40 minutes from my home. Emailed them, had a video call and they invited my wife and I to their home. Awesome! They did mention how they could "help" with discounts on their own meds if needed. Few days later I decided to contact RCH4 Charity and was approved quickly. Was so excited.

    Decided to email ALS Worldwide and share my great news. Never got an email back but Stephans wife called and said he was sick with the flu of a cold. That's the last time I ever heard from anyone at ALS Worldwide. Have emailed and called several times, no reply. ......from them who live 40 minutes away. Talk about a scam eh?

    The Charity that supplies me with RCH4 has been great. Answer my questions, provide support and in the few months I've been taking it, no measurable progression.

  7. #147
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    Nunhead Man
    You complained about the lack of courtesy by the rch4 charity.
    I feel that in fairness I must speak up.
    I have been on rch4 for nearly 3 years. I am one of the lucky ones as it has virtually stopped my decline completely. During all that time I have had nothing but courtesy and support from the rch4 people who give it to me for free.

    I think it only fair to point out that they probably have to track a lot of people and their associated clinical files in their database. I have sent them maybe 12 files to date in addition to the monthly reports.
    This means we have to scan our clinical documents (clinic reports, genotype, diagnosis, blood tests and so on) and when you do this, the scanner gives the file a name, typically "img.2345678.png" or similar.

    The rch4 people ask us to always rename the file according to their instructions such as `als-joew-usa/bloods-3`. Then they know whose blood report they are looking at. Joe White, in the USA, third blood report.
    If you fail to follow their requests, when they look for your specific document in their database, "img.2345678.png" means nothing.
    I can readily understand that if I do not do exactly as they ask, they could not deal with, or provide support for me.
    Please let us be fair in our comments.

    Sportingmac
    You said "They can give a mouse MND and they can cure it"
    Prize4Life offered $1million to the first lab to extend the life of an ALS mouse by 25%.
    To this day nobody has ever won the prize.

    You also said "Personally I will believe when the highly subjective scoring that is AFRS is replaced by a medically objective test - and such a testing regime has recently been researched and published."
    You refer to a biomarker. There is still none. Although many have been suggested, none have been able to pass validation.
    Flawed as it is, as you correctly point out, the ALSFRS-R score rating remains the global gold standard of assessment of progression and status of the condition. And to a lesser degree, the FVC score.

    Weird Tim
    Best wishes to you for your rch4.
    You mention ALS Worldwide. Couple of months back they maliciously rubbished rch4 saying it was saline or something.

    What emerged was that ALS Worldwide owned by Stephen Byer and his wife who drew out more than $1.2 million for themselves for the year in the last accounts filed. The gross income for the "non-profit" was (I think) $1.4 million. Therefore they buy really cheap and sell for large profit. They are selling (allegedly) counterfeit Radicava from India.
    They are not the only ones. The `net is flooded with other "charities" or "non-profits" selling counterfeit drugs, such as The Social Medwork, Juers Pharma. Dr. Yoshino`s Neurology Clinic in Ichikawa Japan, and so on.

    Most of the counterfeit stuff comes from Russia, India and China.

    I knew I saw a chemical description of the counterfeits somewhere in the past so I went looking. In fact I found it on the rch4 website.
    www.als-new-drug.com/molecule

    So everyone be careful. Weird Tim, you got lucky as you dodged the ALS Worldwide bullet.
    They are the real "SCAMS". Yet nobody says anything.
    Meanwhile, what is extraordinary is the fact that the rch4 charity has been continually been accused as being a "SCAM" - generous people paying their own money to help people they never met. Sad and disgraceful.

    Edit: Important additional comments.
    As for myself, I could see nothing other than a foregone conclusion about my prognosis. Doing nothing was not an option as the docs and neuro`s had nothing to offer that made any difference. I found the rch4 charity and they opened a new book for me. Although they say they make no claims of efficacy and it may not work for me, it was clear to me that IT MIGHT. In view of my situation and no prospects, that was more than good enough for me.

    As to taking a chance on taking something without marketing approval, after contacting numerous users of rch4 around the world It became a non-issue for me personally.
    The charity have given me more support and knowledge than my clinic ever did.
    For sure, I do not care who they are, what they are, or where they are. Thats none of my business. All I care about is that I am provided with unwavering support and professionalism.
    For all those asking why everyone cannot have it, the cost of a clinical trial to get it approved costs millions. Where is the money to come from?
    One last point, I have twice offered to pay them the cost of treating me and they have declined.
    SCAM?
    That is an insult to compassionate people.

    Don
    Last edited by Doblett; 17th June 2018 at 02:38.

  8. #148
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    Yet another post from a different American, sorry for the Tim ;

    But I have always been told that if something doesn't look right then it probably isn't.

    I do understand some of the many difficulties getting a new drug to the market and we are desperate something better for Mnd.

    Hope it works for you.

    Love Terry

  9. #149
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    Hi Don - you might like to take look at this piece of research - objective testing now a possibility.

    http://jnnp.bmj.com/content/jnnp/ear...16744.full.pdf

    Let me know what you think.


    Regards

    Chas

  10. #150
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    Quote Originally Posted by WeirdTim View Post
    Hello, diagnosed with ALS in April 2017. Started taking RCH4 two months ago. No side effects and no measurable progression. Charity has been professional and very helpful.
    Tim - I was diagnosed in October 2014 - and had no real muscle degradation for over 2 years - walked with a limp and still had good overall strength - I wasn't taking RCH4.

    Kind regards

    Chas

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