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Thread: Stem Cell

  1. #1
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    Stem Cell

    Hi,
    Has anyone had any experience of stem cell treatment?

    I am considering Going to Moscow for treatment at Swiss Medica. They give you 6 types of stem cell over IV.

    Brainstorm are also offering patient access, so paid for stem cell treatment. The medical background of this company, and its stem cell treatment that injects directly into the spine, has proved effective. I think the improvement lasts for about 1.5 years, but they are working on it.

    http://www.brainstorm-cell.com/patie...ess-to-nurown/

    If users want this treatment, they have to sign up for it, at the bottom of that web page. Brainstorm say the more people want the treatment, then the more likely they will proceed, otherwise it may not be financially viable to do so. If you sign up, you don't have to commit.

    I think it is worth signing, so that the next step towards a cure can be found. Projects failing because of lack of support, and financial backing are too many in my view.

    Thanks everyone.
    Steve

  2. #2
    Forum Member Terry's Avatar
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    Hi Steve;

    I do know of one person in near me that had it and went on TV saying it made a lot of difference with improvement in every aspect.

    I'm afraid that the report was false and the family didn't want to quash her hopes.

    Unfortunately, I don't think that there are any proven cases for stem cell treatment yet

    Best wishes, Terry
    The forum is still the best sorce for friendship and information. TB

  3. #3
    Forum Member Ellie's Avatar
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    Hi Steve,

    Whatever about NurOwn, there's zero evidence that stem cell treatment offered by clinics around the world give any improvement in ALS but there is evidence of harm - see ALSUntangled for reviews.

    Save your money.

    Ellie.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

  4. #4
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    Thanks Ellie,
    I'll take a look.
    Steve

  5. #5
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    Hi Ellie,
    I couldn't find anything on ALS untangled about NurOwn.
    Steve

  6. #6
    Forum Member Onein400's Avatar
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    With regards to Stem cell treatments for MND/ALS.

    There is NO approved or proven treatment anywhere in the world - FACT.

    Therefore, anyone thinking of getting involved should only get involved with proper clinical regulated trials. Trials should be FREE as they are funded by investors or grants from medical organisations etc.

    If you are talking to anyone offering paid for treatments, that is a huge RED Flag and you should exercise extreme due diligence.

    I have ALS/MND and there is no stem cell treatment anywhere I would consider currently. There is a lot more to be said about stem cell therapy and viability for a disease like als. But putting this aside, if I were interested I would apply to be in a free trial.

    Brainstorm have YET to move to phase 3 trials, ie the critical stage that is needed before any efficacy can be PROVED OR NOT. Their press releases say they are looking at Phase 3 later this year. If you are interested you should contact them and ask to be considered for the Phase 3.

    You should speak to your Neurologist before you do anything. Listen to him/her, trust them. You might also want to watch the video at the end of my blog post regarding research progress. It's very enlightening. Read the section around the video.

    http://wp.me/p5hqWZ-1e2

    Lee

  7. #7
    Forum Member Ellie's Avatar
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    Hi Steve,

    No I meant read reviews on Stem Cell treatment clinics on Untangled. They don't review treatments undergoing Clinical Trials (such as NurOwn)

    Ellie.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

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    Hi just be careful. My father has stem cell treatment in Bangkok at a very good stem cell company. We did loads of research and found this one to be very good and it was a bonus because he lives in Thailand.
    He started the treatment on 2nd January this year. He finished the treatment on 28th January and three days later I had to rush him to our local hospital. He had heart failure, respiratory failure and pneumonia. I don't believe that this is all due to the stem cell treatment but they said he would have a chest X-ray before he started but they were keen to get going so said they would do it later. Later was three weeks into treatment and they said his lungs were clear. I find this hard to believe as his pneumonia was really bad both lungs were full and he had been feeling ill for weeks but we were told it was side effects of stem cells. My father then went on life support with a tube down his throat . None of the doctors understood MND said they fitted him with pacemaker .
    It has been a very frustrating time over here I even called MND helpline and spoke to a lovely lady Adele. I had to get a lawyer to sort out a living will as they resuscitated him against his will.
    My Father lost his battle with MND yesterday in hospital in Thailand. I am so upset his wish was to go back to the uk to see his family. I am not saying he passed due to the stem cells but just that you need to be careful.
    Make sure you have in writing any treatment you want or don't want and take it with you. When your treatment has finished if you become ill the stem cell company will not be the people treating you, you need to know if there is enough knowledge in the country that you are going to. My dad was in a private hospital and not one of the doctors had any knowledge of MND. Make sure you have medical insurance even if it is really expensive with MND we have spent over 100,000 pounds on treatment my dad couldn't get health insurance over here.
    If you do it good luck but be careful!

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    Hi KimmyJane,
    So sorry to hear about your dad. Awful treatment. Good advice and I will certainly heed your words.

    If you don't mind me asking, how old was you father, and what type and stage of MND was he at?

    Stay strong.

    Steve

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    Hi Steve,
    My Father was 72, he was only diagnosed with MND in August 2016. He had bulbar palsy it is so cruel . He wasn't end stage when I finally got to see him on 1st December 2016 but he had difficulty breathing. He was choking on water and most foods. I must say though after the stem cell treatment he didn't choke and could drink and eat most things. He went downhill rapidly and this was due to the pneumonia it was cruel to see someone you love gasping for air. I begged for MND treatment at the hospital but due to a lack of knowledge the consultant wanted tomake him fit and strong. It was only 12 hours before he passed that I got him on morphine which settled him he then went to sleep and passed peacefully.
    I have mixed feelings about the stem cell treatment, I believe if my Dad hadn't had it done he would have passed much sooner,also he was gaining muscle in his legs but only a small amount. On the other hand you don't really know how it is going to affect your body. When my dad had them injected into his spine I cringed and thought what on earth are we messing with. It is very frightening but it was my dads last hope and he was desperate. He begged them to do the treatment, he knew what he was doing and went into the treatment knowing it is experimental and that it could make him worse. Although we were told there are no side effects he was extremely tired, but this could have been the pneumonia..
    when my dad was having the treatment another older man from Dubai was having treatment he didn't want it but was pressured by his family . He couldn't walk when he first started but after the three weeks he was walking and feeding himself. But I don't know how he is now.anyone seeing my dad would have thought how great he looked but only three days later he was on life support..
    I can't think of anything else to tell you but please ask any questions, I'm not on here everyday due to arranging things for my dad over here but I will get back to you.
    Take care
    Kim x

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