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Thread: stem cell treatment for mnd

  1. #1
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    stem cell treatment for mnd

    hi my husband has recently been diagnosed with bulbar onset motor neurone disease. he has been reading about stem cell treatment. does anyone know anything about this treatment.

  2. #2
    Forum Member Barry52's Avatar
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    Hi Margaret92.

    Sorry to hear about your husband but you will find support and advise here. If you type stem cell into the search forum box you will find lots of posts on the subject.

    Barry
    Life is a journey, not a destination.

  3. #3
    Forum Member Terry's Avatar
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    Hi Margaret and welcome to the forum;

    Sorry to hear of your husbands recent diagnoses and you must be both still in shock.

    Stem cells have helped research a lot but there's still no proof that they have any effect on Mnd directly. I might be wrong. Many places claim to cure or improve Mnd but I don't think that any have done that.

    Best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  4. #4
    Forum Member Ellie's Avatar
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    Hi Margaret,

    Sorry you find yourself having to join the forum.

    No stem cell procedures have, thus far, shown to have any positive effect on any form of MND. Research is ongoing, I'm sure your husband has read about these.

    There are Doctors (China, Mexico etc.) falsely claiming a "cure" and charging a fortune to the desperate
    I advise him not to waste his money and hope.

    For now, he should keep as healthy as possible - good nutrition & hydration are vital, so get a feeding tube early on - and be in good health for any trials/treatment when they arise.

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

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    Hi Barry52
    Many thanks for your reply. I will carry out your advice
    Margaret

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    Hi Terry
    You are right about being in shock. It has taken a long time to accept the diagnosis, indeed there are still days when we hope that the symptoms have been caused by a different illness.
    From Margaret

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    Hi Ellie
    Many thanks for your reply.
    We are seeing the Consultant tomorrow for advice on stem cell treatment. I hope my husband makes a wise choice. He wants there to be a cure and sadly as you say there are people out there waiting to take advantage of desperate people.
    Margaret

  8. #8
    Forum Member Onein400's Avatar
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    I have had MND for 2 years, and with regards to Stem Cell therapy there is NO therapy approved or proven anywhere in the world. There are advances being made, but I see them coming from gene therapy rather than stem cells. Stem cell therapies for some reason are always in the media.

    Ask your consultant and also talk to the MNDA. They will give you good advice. A real litmus test for me was "do any MND associations worldwide provide grants to stem cell therapy companies?" I believe the answer is no.

    On a personal note, I was'nt going to spend all my assets and time travelling to unproven companies.

    You are right, accepting a diagnosis is hard. But you don't have to accept that it will progress at the same rate. Now 3 years down the line, I must say we have accepted it and enjoy every day. Neurologists in the UK are very good. They will always look for a treatable condition first, and they have seen so much.

    This is a great forum.

    You might enjoy my blog onein400.com/blog it's not depressing I promise you.

    Lee

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    Hi Lee
    Sorry for taking so long to reply to your post. I will look at your blog and try to get my husband to do the same, he has no contact with anyone with MND
    Margaret

  10. #10
    Forum Member Barry52's Avatar
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    Hi Margaret,

    You say your husband has no contact with anyone with MND. May I suggest you visit a local branch of MNDA if there is one in your area. You can find them listed on this website. I am involved with 2 branches and our meetings are very rewarding. We share tips and often have guest speakers. Last month we had auctioneer Charles Hanson from Bargain Hunt and this month we have Sally Light CEO of MNDA.

    Barry
    Life is a journey, not a destination.

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