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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
    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; 17 October 2019, 15:57.

    Comment


      #3
      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.

      Comment


        #4
        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 Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

        Comment


          #5
          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.

          Comment


            #6
            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

            Comment


              #7
              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,

              Comment


                #8
                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

                Comment


                  #9
                  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 Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  Comment


                    #10
                    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
                    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.

                    Comment


                      #11
                      Hi Moto, welcome to forums. I see that you've already had good advice about stem cell therapy and research. So I won't repeat, just let you know that I agree with all of them.

                      I tell all new people to forums to start voice banking whilst their voices are still strong. If you do a search on the topic lots of conversations will come up with all of the information you need. If you reply to one or other of those posts it will bring the conversation to the top again, which is good.

                      We don't know if we'll totally loose our voices but saving your natural voice will avoid having to use a robotic sounding electronic voice if the worst happens. I hope that this isn't too much information for you at the moment but forwarned is forearmed.

                      Good luck and take care, Lynne
                      ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                      I'm staying positive and taking each day as it comes.

                      Comment


                        #12
                        Originally posted by Terry View Post
                        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
                        Hi...Terry,

                        My MRI of brain is normal & no Lumber puncture was suggested by any neurologist.
                        Drs.are still not sure but looking to my right leg muscles wasting & imbalance during walk they are suspecting anterior horn cell disease.
                        In my case they are telling this disease is progressing but very slowly.
                        Can any body tell me the difference between anterior horn cell disease & MND.
                        Best wishes,
                        Moto

                        Comment


                          #13
                          Hi Moto, my MRI showed anterior horn effects that suggested MND. Then muscle and nerve conduction studies three times, a few months apart. The first of these confirmed MND and the three compared to try to work out a possible pattern of degeneration and help with a tentative prognosis. It was agreed to be comparatively slow deterioration but definitely ALS. I wasn't given a lumbar puncture. Lynne
                          Last edited by Lynne K; 20 October 2019, 10:32.
                          ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                          I'm staying positive and taking each day as it comes.

                          Comment


                            #14
                            Hi Moto,

                            Spinal motor neurons are also called anterior horn cells.

                            ALS (the most common MND) is an anterior horn cell disease.

                            Did you ever have a muscle biopsy?

                            How long ago was the EMG performed? (Is that where you saw anterior horn cell disease mentioned?)

                            I'd also recommend havimg a lumbar puncture, really just to complete all tests.

                            Anterior horn cell disease isn't directly related to the anterior horn structure of the brain, as mentioned above.

                            Best wishes,

                            Love Ellie.
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                            Comment

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