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  • Stem Cell therapy for ALS

    Posted by Azizullah Khattak on August 10, 2021 at 8:46 am

    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.

    Naomi replied 2 months, 3 weeks ago 25 Members · 41 Replies
  • 41 Replies
  • Mike Leist

    Member
    August 13, 2021 at 8:38 am

    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.

  • Azizullah Khattak

    Member
    August 13, 2021 at 12:07 pm

    Thank you Mike

  • Janice

    Member
    September 10, 2021 at 12:18 pm

    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.

    • NJGuy

      Member
      September 10, 2021 at 5:10 pm

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

      Thank you!

    • NJGuy

      Member
      September 28, 2021 at 10:30 am

      Janice,

      Can you please share details of clinic where you received stem cell therapy? I and my family will be really so thankful to you!

      best regards

       

  • NJGuy

    Member
    September 12, 2021 at 3:59 pm

    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 🙂

     

     

    • Jean-Pierre Le Rouzic

      Member
      September 15, 2021 at 1:48 am

      > 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”

      • NJGuy

        Member
        September 15, 2021 at 12:19 pm

        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.

         

      • NJGuy

        Member
        September 16, 2021 at 3:21 pm

        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!

         

  • Jim Conner

    Member
    September 14, 2021 at 8:00 pm

    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.

  • Robert Harrigan

    Member
    September 15, 2021 at 9:11 am

    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.

    • Jim Conner

      Member
      September 15, 2021 at 11:01 am

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

  • Linda Lennon

    Member
    September 15, 2021 at 11:08 am

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

    • NJGuy

      Member
      September 16, 2021 at 4:03 pm

      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.

       

      • Jean-Pierre Le Rouzic

        Member
        September 17, 2021 at 1:55 am

        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/

  • Jim Conner

    Member
    September 15, 2021 at 11:31 am

    Thank you.

  • Carol

    Member
    September 16, 2021 at 3:43 pm

    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.

  • Wayne Truchan

    Member
    September 16, 2021 at 3:53 pm

    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.

  • Carol

    Member
    September 16, 2021 at 3:57 pm

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

  • Kathy stitz

    Member
    September 16, 2021 at 5:55 pm

    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.

  • Kim

    Member
    September 21, 2021 at 2:47 pm

    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.

    • Roman

      Member
      December 14, 2023 at 2:25 pm

      Im very glad the Giostar therapy was good for you. I have some months planning to go to Giostar and your testimony esforcé my decision. Can you share in what location of Giostar you were and how, at this time, the stem cells help you. I wish you be good. Thank you

  • Patti

    Member
    September 21, 2021 at 3:18 pm

    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.

  • Debbie Harris

    Member
    December 14, 2023 at 1:20 am

    My son-in-law had stem cell therapy in mid November 2023 and so far he hasn’t seen any improvement. He had it at Bio Science in Fort Lauderdale, Florida. It costed $29,000. He does have the progressive ALS and was diagnosed this last July.

    • Roman

      Member
      December 14, 2023 at 2:31 pm

      I believe it was a excellent decision, specially at the beginning of the diagnose. I understand the stem cells take from 3 to 6 months to give results. I think stem cells are our cure in future.

  • Marcelyn K. Harness

    Member
    December 14, 2023 at 5:48 pm

    When my daughter was diagnosed with ALS (familial) I thought that stem cells may be have some merit. I am a retired hospital CEO. I have read every study of that therapy, talked to doctors that I knew that were using stem cell related therapies for pain management, etc. In summary, I have never seen a study that can point cconclusively to the success of stem cell treatment. I would be very leery of promises of success by anybody, especially those outside of the United States.

  • Quaintance

    Member
    December 22, 2023 at 10:48 pm

    The documentary Gleason on Amazon is a gut wrenching story of a thirty something NFL player with ALS. You actually see him getting stem cell therapy. Very discouraging because his ALS progressed faster after the stem cells.

  • Timothy D Mastin

    Member
    December 28, 2023 at 2:57 pm

    The recent AdComm for Brainstom’s Nurown this past September was very bias. Days prior Brainstorm changed it’s application from treating ALS to treating mild to moderate ALS(26 & above on the ALS-FRS scale), in which it showed good #’s for. Relyvrio did not show great #’s either but the FDA approved it anyhow, using regulatory flexibility. I believe that big pharma is in control here, with ALS drug sales world wide in the billions, these companies provide ALSA(ALS ASSOCIATION), who has a 10.5 million dollar payroll, with operating money. Furthermore, emails from FDA to ALSA, from 2018 through August of 2023, display the FDA’s requests to ALSA for ALS AdComm voting panel members!! The emails were discovered through the freedom of information act. There are many more bits & pieces to all of this so if you would like to learn more please go to NO MORE EXCUSES- ALS WATCHDOGS on fb, Twitter & Instagram, and their YouTube channel, ALS NEWS NOW! which has many NurOwn success stories. NME is run by ALS patients for the good of all pALS, has a zero dollar payroll & no monetary conflicts. I just want to ad that NurOwn doesn’t help everyone, and much like treating AIDA, no one treatment will help all & it will take a variety of treatments since ALS is a heterogeneous disease

    • Roman

      Member
      January 5, 2024 at 10:41 pm

      I totally agree

  • Roman

    Member
    January 5, 2024 at 11:06 pm

    Also I would like to add that in Israel had a clinical trial in phase 1 and 2 “transplantation of astrocytes derived from human embryonic stem cells” . They obtain good results and will continue with phase 3.

    I contacted the sponsor Kadimastem to ask when they plan to have a clinical trial in US, they answered although this spring they received an IND appoval from FDA, they are working hard to star in US a clinical trial they will not be read this year (2024).

    Takes too much time to make decisions while our devasting disease is progressing fast in some of us.

    Also is not easy to engage an a clinical trial, I have found a lot of burocracy.

  • Timothy D Mastin

    Member
    January 10, 2024 at 1:11 pm

    Roman this could be another great treatment but in my opinion until we unite and start screaming loud like the AIDS community did, it will also be held down. I believe if all pALS were united through NO MORE EXCUSES, we would have effective treatment instead of these so called life extending, 3 to 6 month crap drugs that are worthless in my opinion. Unfortunately uniformed pALS buy into these drugs on the recommendation of their neurologist are only empowering big pharma to keep ALS right were it’s currently at. All pALS please join NO MORE EXCUSES – ALS WATCHDOGS on fb, Twitter & Instagram. NME is a zero dollar payroll ALS advocacy group run by pALS for the best interest of all pALS

    • Amanda

      Member
      January 18, 2024 at 10:26 am

      Thanks for the information Timothy-d-mastin! I’ll look into your suggestions. I do agree that if we all unite and speak up, we are more likely to see results. I’m one of the lucky ones on QALSody (Tofersen).

      Amanda

  • Eric

    Member
    January 21, 2024 at 2:34 pm

    Hello fellow warriors fighting als. I’m 57 and it’s moving to fast I’m going to giostar in Mexico for stem cell therapy Feb 4. I feel its the only hope I have. It’s 17000 dollars at this place I will keep you posted good bad or indifference. Keep fighting send love

    • Naomi

      Member
      January 25, 2024 at 3:15 pm

      Please let us know, we are looking for something for my husband, hie ALS is fast moving, we need to slow it down

      • SarahC

        Member
        February 3, 2024 at 8:27 am

        We also are interested in stem cell. I’ve recently learned of Giostar Chicago. Will continue to research.

    • SarahC

      Member
      February 14, 2024 at 2:48 pm

      How are you doing since your stem cell therapy in Mexico? Would you share more about your experience? Thank you!

    • Naomi

      Member
      February 21, 2024 at 9:16 am

      How are you doing after your stem cell? I pray better…

  • ccleland

    Member
    January 23, 2024 at 10:16 am

    My husband recently passed away with a genetic mutation of ALS. His father also had the gene. He progressed very fast he was using a cane in November and completely bed-bound by February. Of course, like everyone here, I researched everything and anything I could find to help him. I came across a clinical study on the “.Gov” website for a stem cell study in the US, in Coral Springs, Fl. It was very expensive and out of pocket. However, the cost to get him from CT to Coral Springs FL, via ambulatory transport with a nurse on board was more than the stem cell treatment. We went in April 2023. He had some remarkable results directly after the treatment and for the few months after that. He went from not having any motion in his arms, legs, and hands to being able to move his arms and legs where he could not bend them at all before they were locked. We did not see much change in his hand movements. His PT was very impressed with the difference he saw in how much motion he was able to achieve with the exercises. We planned to go back for a second treatment. However, my husband had an ongoing issue with kidney stones and in July of 2023 he had a terrible kidney infection that turned septic so they were not able to remove the huge staghorn kidney stone that had developed over the month of being bed-bound, causing pain and blockage, until the infection cleared. Unfortunately, after several weeks in the hospital then developed pneumonia. Which made everything worse to the point he had to be on oxygen and a vent 24/7.. He fought very hard till the end to try and get better but with the combination of all of this and ALS his body just could not take it. The decision to put him in hospice was the only thing the doctors said they could do. I don’t believe he died from ALS.. He died on 9/2/23 because of the aftermath and complications from the staghorn stone. We definitely would have gone back for another stem cell treatment. I am attaching the Website where the study is still showing and an image so anyone interested can do their research.

    https://clinicaltrials.gov/

    Sending love and hope!

    • Dagmar

      Member
      January 23, 2024 at 11:05 am

      I am so sorry for your loss. Your husband made a courageous fight. Thank you for sharing your experiences with the stem cell treatment. I’m sure this will be of interest to our forum members.

      • Blind

        Member
        February 20, 2024 at 2:38 pm

        I am an ALS patient at Mayo,I’m, interested in finding the coral springs location to see if I am possibly a candidate for stem cell treatment,so so sorry to hear of your losshears my email [email protected]. Thank you so much

  • Roman

    Member
    January 23, 2024 at 11:49 pm

    Ccleland

    Im very sorry for your husband. I appreciate very much sharing us your info and experiencies. I believe in the future stem cells will be the cure for ALS. Again Thanks. Blessings

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