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    • #20199
      Azizullah Khattak
      Participant

      I have read a lot about the effectiveness of Stem cell therapy for treatment of ALS and my neurologist suggested me to try it. What are the views of the members about this. Has anyone tried it and what are the results.

    • #20236
      Mike Leist
      Participant

      Not a lot of people do this yet, because places internationally do not provide validated data that demonstrates success. And it’s expensive. There are some clinical trials that have shown promise for some patients, such as Brainstorm’s Nurown, but it’s not yet FDA approved, nor is it commercially available to the public yet.

    • #20240
      Azizullah Khattak
      Participant

      Thank you Mike

    • #20448
      Janice
      Participant

      HELLO YES I’VE HAD 2CC OF STEM CELLS IN AUGUST 2020 AND MY SON PAID FOR IT.  I FELT BETTER FOR MONTHS AND IT LASTS 9 MONTHS AND I’LL TRY IT AGAIN.

      • #20452
        NJGuy
        Participant

        Can you please give details of clinic where you received the stem cell therapy?

        Thank you!

    • #20451
      NJGuy
      Participant

      Hi

      I was diagnosed with Progressive Muscle Atrophy (PMA) in Jan2021 which kind of falls under MND/ALS, with slow progression. And while looking for possible stem cell treatment online, I found this:

      https://anova-irm.com/en/treatments-disease-stem-cells/neurodegenerative-diseases/amyotropic-lateral-sclerosis-als

      Anova-IRM in Offenbach, Germany seems to offer stem cell therapy for a few types of neuro degenerative disorders – PD, MS including ALS.  I am looking for more references and if found good, it may be worth a try.

      Happy kicking ALS 🙂

       

       

      • #20483

        > Anova-IRM in Offenbach, Germany seems to offer stem cell therapy
        In Germany you can find private clinics that offers (against huge amounts of money) treatments against cancer, diabetes, ALS, Alzheimer. All kind of diseases that are not treatable in the rest of the world. Indeed they are just scams that happen to be (more or less) legal in Germany.

        From a German point of view, these companies are just companies that have to be registered as a sole proprietorship, that’s all. There is no additional requirements in the area of healthcare. Their doctors can even be naturopathe doctors without classical training.

        From the perspective of USA/Japan/Rest_of_EU these clinics would probably be illegal.

        Please not that this clinic is not even registered as providing stem cell therapies: It is registered as “Specialist in diagnostic radiology and physicist”

        • #20495
          NJGuy
          Participant

          Thank you so much for your reply, Jean!

          I had found one more – Global Stem Cells in Thailand, they have many videos of the patients, not sure if those are real or actual patients.  Also have found reviews which are pretty conflicting.. so it is hard to be convinced..

          Thanks again!

           

          Special Note from the Forums Moderator:

          Stem cell therapy for ALS is still in the stage of clinical trials. It has not yet been proven or approved as a viable treatment for ALS. Always be cautious of groups who claim to have successfully treated ALS. There is no proof yet. Please do not share medical misinformation with your fellow pALS and members of this Forum.

           

        • #20505
          NJGuy
          Participant

          to moderator:

          Not misinformation:) Trying to find the views from this forum which can help me and possibly others!

          If you know how difficult is the time for us (me and my family and of course for all PALS) and how desperately we are looking for cure or anything that will bring even smallest improvement to the symptoms!

          And we also look for right feedback from those who have got treatment and got better!

          Hope you understand!

           

    • #20482
      Jim Conner
      Participant

      Go to Calgary Flames website and check out Chris Snow and his story. He underwent stem cell treatments in Canada. As I remember he was good for awhile but the symptoms came back. He is currently undergoing treatments in Toronto. His is a familial ALS.

      Its a sad, but learning family story.

    • #20479
      Robert Harrigan
      Participant

      Mayo has a clinical trial going where they inject stem cells into the spinal fluid. My wife is on the list to be included in this trial. Hope she is enrolled soon. They are not showing any results on the clinical trials.gov site yet.

      • #20492
        Jim Conner
        Participant

        Interesting. That Mayos in Minn. or Ari.? The only contact I get from them is for donations.

    • #20493
      Linda Lennon
      Participant

      Mayo clinic is offering one but you need to travel to the Minnesota location

      • #20509
        NJGuy
        Participant

        This is the clinical trial NCT03268603 – Mesenchymal stromal cells (MSCs) for ALS

        There are three recruiting centers  Jacksonville, FL; Scottsdale, AZ, Rochester, Minnesota. All three centers will recruit patients as per the wait list, some initial visits needed to the center where recruited first and then actual stem cell treatment to be received at Rochester center.  And also I found from one of the center that there are no sponsors, all related expenses like travel, accommodation etc being on patient’s side.

         

        • #20513

          I guess this clinical study is more credible than many other.
          Yet from a publication [0] it looks like Nurown’s therapy.
          It’s reinjected MSCs that are “expected” to produce Vegf, a neurotrophic factor.
          There were two dozen unsuccessful Mesenchymal clinical trials in ALS, why do they expect this one to be successful?
          Another thing is a bit strange is that it looks like that there was no pre-clinical trial, they jumped from in-vitro experiments to clinical trials!
          Other companies could find this as unfair competition distortion.

          [0] ncbi.nlm.nih.gov/labs/pmc/articles/PMC7977179/

    • #20494
      Jim Conner
      Participant

      Thank you.

    • #20506
      Carol
      Participant

      My neurologist says his patients seeking stem cells abroad come back with infections. I live in Minnesota have seen 3 neuros there; am on list (maybe). They’ve (Mayo) been very dysfunctional especially since covid and their new computer system.

    • #20507
      Wayne Truchan
      Participant

      My 24 year old son (was 23 at the time of diagnosis) was diagnosed with ALS in March 2021 and I have him on the list at Mayo. If anybody out there can offer any feedback on stem cell I would appreciate it. We had genetic testing done and nothing was found so his ALS is sporadic I guess. As far as that goes, any positive recommendations at all would be appreciated. My wife, my other son, and myself are all devastated that our youngest member of our family has been found to have this disease.

    • #20508
      Carol
      Participant

      Wayne, I’m so very sorry about your son.

    • #20511
      Kathy stitz
      Participant

      Wayne, I’m so sorry.  That is so young to have this horrible diagnosis.   I will be thinking of your son and best wishes to him and to your family.  I have ALS as well and it is a devastating and debilitating condition.   I wish they had a cure for all of us who are suffering with this every day.  As far as stem cell therapy, I think it is really expensive and I agree with the moderator that it has not been proven to be an effective treatment for ALS.

    • #20541
      Kim
      Participant

      I have ALS and have experienced stem cell therapy. I went to Giostrar in Mexico which I found to be incredibly professional. They are staffed with doctors anaesthesiologist nurses etc. They are attached to their own lab where they cultivate the cells just prior to injecting them into their patients. I started off with a three week treatment where I went once a week. The first week the MSC stems were delivered IV accompanied with oxygen and vitamin therapy. The following two weeks the cells were intrathecal (into spinal canal). Again these treatments were wc company with oxygen and IV therapies. After three months, I returned and did one ‘booster’ treatment of IT, stem cell injection with the vitamin and oxygen therapy. I felt absolutely amazing!

      Most clients will do stem cell therapy once a year maybe twice. But that’s just people without health issues that are simply doing it for your own health and well-being and anti-aging etc. With ALS, I figured I wanted to keep a large backlog of those cells working and transforming into some thing that I hoped would help me 🙂

      My reasoning for going was to mimic the Nurown clinical trial. I was set to go at least three times a year if I thought it was going to be helpful. When the results came out for phase 3 of the trial indicating that there was no statistical significance to this type of treatment, I put my own stem cell therapy on hold.

      scientifically, I think they might be a long way from The stem cells differentiating into motor neurons Or having a direct impact on the disease itself  However In terms of overall health anti-aging and well-being, I think it’s amazing. As I say I felt fantastic, but it’s very expensive so I have put my funds towards other strategies.

      If you have the means and the money, I would highly recommend it. Giostar also has a clinic in Chicago.

    • #20542
      Patti
      Participant

      My brother, diagnosed earlier this year with bulbar ALS, had a stem cell transplant for multiple myeloma maybe four years ago? I.E, complete eradication of the immune system followed by receiving an autologous bone marrow transplant.

      Might this have precipitated the onset of ALS? Or did it slow down the progression?

      Rhetorical question.

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