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    • #12478
      Glen North
      Participant

      I’m considering going to Korea for stem cell treatment.  Currently it is the only approved stem cell treatment in the world for ALS.  I would be interested if anyone has any experience with this treatment.

    • #12491
      Dagmar Munn
      Keymaster

      Glen – – A couple of questions for you: What exactly are they promising the treatment will do? And who has “approved” it? How many times do you have to go back?

    • #12492
      Glen North
      Participant

      Hi Dagmar,

      They aren’t making any promises, the best hope is that it slows progression somewhat.  It is not a cure.  It is approved by the Korean FDA, and they are undergoing approval in Europe.

      I will have to return twice after my initial visit.  They have just got approval to freeze the stem cells, so they will only have to extract once.

    • #12493
      Dagmar Munn
      Keymaster

      What I understand about stem cell therapy (other members feel free to chime in and correct me) is that the stem cells grow into generic neuron cells. These are put back into your body, and, these neurons “support” your existing neurons and motor-neurons ( or whatever you have left following onset of ALS). You are not getting new motor-neurons – – only a fresh supply of generic neurons.

      So I wonder how this claims to slow progression (ie., loss of more motor-neurons)?

    • #12494
      Brett
      Participant

      Glen, please keep us posted!!!

    • #12503
      Glen North
      Participant

      Dagmar,

      These stem cells are extracted from the spinal cord no our fat.  In layman’s term the stem cells have the ability to have an anti-inflammatory effect an neuro-protective qualities.  Here is a link to Coretem’s site.

      http://corestem.com/en/m21.php

      It”s certainly not a cure, but may be a way to extend your time.

      btw, i certainly wouldn’t consider any other type of stem cell treatment….other than  NurOwn, but that is still in Phase 3 trials.

      Brett – I’ll definitely keep you posted.  I”m planning to go in October.

    • #14578
      Ahmed Hassan
      Participant

      Glen, please keep us posted

      I am exploring the opportunity to send my brother who have ALS to Korea for the same treatment.

      please let us know your experience

       

      Many thanks

    • #14585
      Glen North
      Participant

      Hello Ahmed,

      I didn’t actually go to Korea due to the fact they closed their plant for an FDA inspection.  I then opted for my second choice which was Sential in Mexico.  I received 360 million stem cells  via the carotid artery, unfortunately I haven’t noticed anything.   I am now planning a trip to China where i’ll receive neuronal  stem cells along with other treatment  over 14 days.  I’ll  keep you posted.  All the best to your brother.

       

       

       

    • #14594
      Ahmed Hassan
      Participant

      Many thanks Glen for your kind reply

      Are you going to WMC ?
      <p class=”p1″><span style=”font-size: 13.5pt; font-family: ‘Times New Roman’,serif;”>http://www.wumedicalcenter.com/article/Treatment/52019751571.html </span></p>

    • #14606
      Glen North
      Participant

      Ahmed,

      Yes, i’m going to WMC, just waiting for the Corona epidemic to pass.

    • #14719
      Romolo Pallini
      Participant

      HI,

      I have been to Korea 4 Times in the last 12 months.

      I did not notice any change on the pace of disease progression.

      in Seoul a meet an American doctor with ALS, he went 3 times with good visible results.

      so……hard to say if treatment helps or not.

      cost is about 40K each injection + travel.

      procedure is not to painful , but annoying as you have to stay flat 6h after each procedure.

      1st trip bone marrow extraction . after 6 hours flat.

      2nd trip.: day one spinal fluid extraction. after 6 hours flat.

      day 2 Stem Cells ( mixed with spinal fluid) injections . again 6 hours flat. this procedure may result in Flu like symptoms.

      No sure I will do one more injection as I don’t see good results. but we all react to treatments in different ways.

      good luck, and contact me for more details.

       

    • #15244
      Ahmed Hassan
      Participant

      HI Romolo,

      would you put me in touch with American doctor with ALS you met in Korea and he went 3 times with good visible results.

      i am planning for a my brother use of Neoronata-R and i am after positive feedback if any.

       

      Many thanks

       

    • #15255
      Romolo Pallini
      Participant

      Hi Ahmed,

      unfortunately I don’t have his contact info.

      sorry.

      for Neoronata-r where would you get the treatment done?

      in Korea is a different one, similar but not the same.

      all the best Romolo

    • #15276
      Ahmed Hassan
      Participant

      Dear Romolo,

      in Korea , we plan to visit Cell Therapy Center, Hanyang Univ. Medical Center for Neoronata-r therapy

       

    • #15277
      Romolo Pallini
      Participant

      I have been there 4 times. Not sure I did see any results.

      they are very efficient and professional. Unfortunately in my case I can’t say I did help.

       

      still given we have no many other therapies available, we have to try all possible ones

      all the best

    • #15279
      Fatimah
      Participant

      <p style=”text-align: left;”>Hello everyone</p>
      I took my mother , 70 years old, last February to Ukrainian stemm cell centre.

      They claimed she will notice some improvement and the progression will be sslow. She has bulbar ALS affecting her speech and swallowing  mainly.

      Unfortunately,  after 3 months of the stem cell, we did not notice any improvement and her speech is deteriorating.

       

      We are trying to find any proper way of communication, she can not read or write ,so it is more difficult for her and for us.

    • #15280
      Romolo Pallini
      Participant

      Hi Fatima,

      does your mother use Neudexta? It really helps my speech.

      is expensive, but on the Neudexta website you may find a coupon.

      is worth to try.

      all the best

    • #15453
      loyalng
      Participant

      3 times /2 shots in May – June 2018

      I didn’t see any results

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