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    There is exciting progress being made through innovative research related to the potential of many types of stem cells for slowing MS disease activity and for repairing damage to the nervous system. Join us for a conversation about stem cells and MS. Share your thoughts and questions below. And check back later this month as we discuss discuss this topic with two leading researchers, Dr. Richard Burt and Dr. Jeffrey Cohen.

  • maria1

    I know of someone who years ago invested 75,000 of their own money for stem cell therapy for ms, and for years was fine. Now symptoms are returning with vengance. What are some of the stats for stem cell therapy. Any reports of the longevity of relief?

  • kludwig
    maria1 wrote:

    I know of someone who years ago invested 75,000 of their own money for stem cell therapy for ms, and for years was fine. Now symptoms are returning with vengance. What are some of the stats for stem cell therapy. Any reports of the longevity of relief?



    Maria, I'm sorry to hear about your friend. There are certainly a lot of scams out there designed to separate scared people from their money. This is NOT one of them. Dr. Burt has a long track record of helping people with all sorts of autoimmune diseases. His treatment is currently in a phase III FDA approved clinical trial. Many major insurance companies are now covering the cost of his treatment as they realize the return on investment is only 3 to 5 years. How do I know so much about this? I was treated in December of 2013. It is a serious medical procedure, but I will say that Dr. Burt and HSCT have given me my future back.
  • clonx

    What is success rate, risk factors and availability of treatment to other states.

  • Trudee_Manderfield
    Hello, Here is the info on Dr Burt's clinical trial: http://clinicaltrials.gov/show/NCT00273364 Here is Dr Burt's website: http://www.stemcell-immunotherapy.org That should start you off with some of the info you're looking for.
  • weeloulou89
    Is there any new drug trials that are not licensed yet that have been found to help ms? I am 25 years old and had every treatment on the nhs apart from bone marrow transplant and severe chemo which is my last option. Lou x
  • Trudee_Manderfield
    I've undergone this stem cell transplant with Dr Richard Burt. It was one of the best decisions I've ever made. I'd love to speak with those considering this treatment. There are hundreds of us success stories, in fact. I'm going to try and get some more advocates here in the discussion. If you'd like to read more about my transplant, here's my page: https://m.facebook.com/profile.php?id=1408007966082845&ref=bookmark I'm so excited that The National MS Society is starting to talk about this treatment! :D
  • sharimcglynn
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  • izzie

    thank you for the information....however i can't get on the facebook site....please help me:)

     

  • AndyRN1966
    It's very interesting but I am leary because how do I know if I will be one who has destructive side effects.
  • mbc

    Is this type of treatment (generally) recognized and supported by insurance?

  • khuff
    HI!!! I did too!!!
  • jaber

    Hi Trudee,

    I have emailed my request to Kathleen A Quigley at the clinic and followed up with coupl of reminder emails but did not hear back from them! It is almost a month now, based on your experience, how long does it take for them to respond to the requests? I at least expect them to respond that they've got my info and will return back to me if I can participate, but this way of no communication, I me even wonder if they got my emails!

    is there any other communication way to dr Burt or the clinic?

     

    thanks

    jaber

     
  • digangi

    Would love to hear more about this. Have been living with MS for 25 years and would  like to find some relief.  Who did your procedure and How can I get involved.

  • digangi

    Where did you have this treatment? was this a trial or did Dr Ruch do this in his practice?

  • rb1kozy
    I would definitely be interested in something like this! I was diagnosed in 2005, been Copaxone since then and recently felt like I'm declining! Looking into starting Tecfidera soon.
  • bjbecker43

    rb1kozy wrote: I would definitely be interested in something like this! I was diagnosed in 2005, been Copaxone since then and recently felt like I'm declining! Looking into starting Tecfidera soon.

    I have been on Tecfidera for about 9 months now and feel better than I have on any othe therapy.

  • kludwig
    For those of you interested in applying for this treatment, here is Dr. Burt's office information: Dr. Richard K. Burt Chicago: http://www.StemCell-Immunotherapy.com All Auto-Immune Diseases (AI) currently being treated by HSCT are on listed on Dr. Burt's website in the About Section. http://www.stemcell-immunotherapy.com/about.html If your AI is not listed, please contact Dr. Burt's office DIRECTLY. ***INITIAL CONTACT should go to the Info email below. They prefer email contact instead of phone calls. Your email will be forwarded to the appropriate person and they will reply to you. Email usually gets a faster response than phone calls. Initial Email: Info@stemcell-immunotherapy.com (email verified with Kate 01/21/2014) They are currently very busy, so it may take some time for them to get back to you so be patient. This treatment is really more of a high dose chemotherapy than it is a stem cell therapy, though your own stem cells are used to recover from the effects of the chemo. This is a serious, lengthy and involved medical procedure, but it is completely worth it. It has brought a halt to my MS.
  • khuff
    Glad you put all the info! Dr. Burt is the best!!
  • CaroleK

    I'm very encouraged to see that the NMSS will be discussing HSCT with Drs. Burt and Cohen later this month. I'm currently undergoing HSCT with Dr. Burt as part of Phase III of his clinical trial for MS. For those of us with aggressive RRMS who are completely non-responsive to the DMDs available out there, HSCT offers real hope for halting the progression of this disease.  MS sufferers need to be aware of all the options available to them, and the NMSS is often the first place those newly diagnosed with or suffering from MS turn to for information.  Having a conversation about this treatment is crucial to ensuring that the NMSS is, indeed, 'the world's best source of information about multiple sclerosis' (taken from the NMSS's Core Values).