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Thread: Hi

  1. #1
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    Hi

    Joining this club today.First noticed my right foot’s tapping sound during morning walk 7 years ago. In these 7 years all treatable diseases were ruled out & Doc.suspected UMND. Will anybody guide me for Stemcell therapy?

  2. #2
    Forum Member Kayleigh's Avatar
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    Hi Moto,

    A warm welcome to this forum.

    As I understand it, stem cell therapy for Mnd patients is still at the research stage and, therefore, has not yet been approved as a treatment for MND in the U.K. There is further information about stem cells and stem cell therapy on the MNDA's website (link provided below):-

    http://https://www.mndassociation.org/research/about-mnd-research/stem-cells/

    I'm not one of the forum members who has detailed knowledge about medical research, but I am very happy to try and answer questions you might have about other MND-related subjects or issues..

    Best wishes,
    Kayleigh
    Last edited by Kayleigh; 17th October 2019 at 16:57.

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

    Foot tapping seams a very unusual way for Mnd to start and wonder how it has developed since 7 years ago.

    You mentioned that your Doctor suspects UMND but if his not a specialist then you need to see one.

    What tests have you had to rule out things?

    I have know of a few people that have had Stem cell treatment for Mnd and it has not made any difference to them, apart from costing them a lot of money. Many clinics offer the treatment with many claims BUT do you trust those claims. I DON'T.

    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 Moto and welcome to the Forum.

    Sorry about your suspected diagnosis. You should def see an MND specialist if you have not done so already.

    There is no magic stem cell treatment available for any MND at the moment, and, if you see ads purporting to offer an ALS treatment, steer clear of it and keep your money - we've yet to see any verified and validated positive outcomes from stem cell 'treatment', in fact, we've seen fatal outcomes.

    There is currently a stem cell clinical trial taking place (NurOwn) which shows promise, but won't be fully evaluated until after all clinical trial data is collated.

    I know this all seems bleak for you but, as you seem to have a very slow UMND, the NurOwn treatment may become available in due course.

    Take care.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  5. #5
    Forum Member Gillette's Avatar
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    Hi Moto and a warm welcome to the forum no-one wants to need. I'm afraid I know nothing about stem cell therapy but others seems to have been able to give you information.

    This forum is a tremendous place for information (both factual and anecdotal), practical advice and support. Feel free to ask or share any questions you have about MND: members are happy help, if they can.
    Dina

    Trying to keep positive, but not always managing.

  6. #6
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    Quote Originally Posted by Ellie View Post
    Hi Moto and welcome to the Forum.

    Sorry about your suspected diagnosis. You should def see an MND specialist if you have not done so already.

    There is no magic stem cell treatment available for any MND at the moment, and, if you see ads purporting to offer an ALS treatment, steer clear of it and keep your money - we've yet to see any verified and validated positive outcomes from stem cell 'treatment', in fact, we've seen fatal outcomes.

    There is currently a stem cell clinical trial taking place (NurOwn) which shows promise, but won't be fully evaluated until after all clinical trial data is collated.

    I know this all seems bleak for you but, as you seem to have a very slow UMND, the NurOwn treatment may become available in due course.

    Take care.

    Love Ellie.
    Thanks for ur guidance

  7. #7
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    Quote Originally Posted by Terry View Post
    Hi Moto and welcome to the forum;

    Foot tapping seams a very unusual way for Mnd to start and wonder how it has developed since 7 years ago.

    You mentioned that your Doctor suspects UMND but if his not a specialist then you need to see one.

    What tests have you had to rule out things?

    I have know of a few people that have had Stem cell treatment for Mnd and it has not made any difference to them, apart from costing them a lot of money. Many clinics offer the treatment with many claims BUT do you trust those claims. I DON'T.

    Best wishes, Terry
    Thanks Terry for ur reply
    My case is a typical one.I have gone through the following tests:
    1.MRI Cervical spine with screening of whole spine at 4 different Institutions in consultation with opinion of 4 different Neurologists
    2.NCS- normal
    3.EMG Showing neurogenic pattern.
    4.No fasciculations.
    5.CPK normal
    Will u please guide me for any MND specialist.
    Best wishes,

  8. #8
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    Hi Ellie,
    Would it be possible to share e mail address or contact no.of any MND specialist for resolving my problem.
    Best wishes,
    Moto

  9. #9
    Forum Member Ellie's Avatar
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    Moto, if your Neurologist suspects MND, you should be referred on.

    This is a list of specialist centres in the UK, excluding Scotland. Look for your nearest "care centre".

    https://www.mndassociation.org/suppo.../care-centres/

    Good luck.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  10. #10
    Forum Member Terry's Avatar
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    Hi Moto;

    How are you now and what symptoms etc do you have?

    We normally have a MIR of the brain and a Lumber puncture to rule out other possibilities.

    Love Terry

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