CHOOSING AN HSCT FACILITY

CHOOSING AN HSCT FACILITY

Deciding which type of HSCT (Myeloablative or Non-Myleoablative) is more suited to you and your own situation will help inform you as to  which facility is more appropriate to treat your MS. It is the general consensus that if you have a progressive form of MS (PPMS or SPMS) Myleoablative HSCT is the most effective treatment. Unfortunately the only places currently treating progressive forms are Russia, Israel and Mexico all  of whom perform the non-myleoablative type.  It has to be said that Dr. Federenko in Russia has achieved some amazing results for PPMS patients that he has treated with his own specific  protocol. In Europe, due to an organization known as EBMT – https://www.ebmt.org/Contents/Pages/Default.aspx. which has formulated a standard treatment criteria to regulate and compare results from patients treated, most facilities will only treat MS patients with Relapse remitting MS, with at least 2 failed DMDs (disease modifying drugs) and current MRI’s that show active lesions and inflammation. This is also true of South Africa, and Singapore as well as Germany and Italy. (See Facilities). I personally believe this to be a sad state of affairs as their decision hinges heavily on very early trials for HSCT where a proportion of PPMS and SPMS patients were included, but ultimately on reflection were older and in many cases sicker, with high EDSS (Expanded Disability Status Scale —http://en.wikipedia.org/wiki/Expanded_Disability_Status_Scale) Scores.  The results unsurprisingly did not bode so well for the progressive patients and these were rejected out of hand for further studies.  This contributed to the EBMT Guidelines as they stand today. It is worth noting that phenomenal results coming out of Russia for PPMS patients disprove these early findings and also reinforce the mantra of this site: HSCT STOPS DISEASE PROGRESSION IN ALL TYPES OF MS!

AA Maximov Hospital Russia

AA Maximov Hospital Russia, where MS patients are treated with Non-Myleoablative HSCT by Dr Denis Federenko

 

18 comments

  1. How do I apply to be accepted for treatment? I currently have rrms DX 02 please email or call 559-903-7109 California. Thanks for your time.

  2. I applied for treatment in Russia and your EDSS score needs to be a 6.0. Mine is 7.0 so I was told that I can not have it done there but I am persistent and will be trying at all hospitals that do HSCT treatment.

  3. Hi. I am 53 years old and was dx with RRMS in late 2009. I have progressed significantly since then to SPMS. I’m not sure which protocol would best for me; however, I am leaning toward what Mexico has to offer. I will speak with my neurologist when I see him next week. Hope do I even apply for this treatment?

    1. Hi Renee. You can apply by e mail. The contact information for Mexico is on the HSCT Facilities page. Its easy to apply. Mexico is a good choice. You are still relatively early if you were diagnosed in 2009, so there is a good chance this treatment will help you. Join HSCT Awareness on facebook to ask other people who have had this treatment for their thoughts! Good luck!

  4. My wife has Primary Progressive MS, age 40, diagnosed 3 years ago and is in need if treatment asap. Please help. Please reply with a contact name and phone number. Thank you

  5. Hello, I’m a 47 year old female the was Dx with RRMS in 1992 (which was the onset and confirmed via MRI). I experience little to no flare ups till about 7 years ago where my balance, coordination, vision, memory issues starting to decline/decrease even though my MRI’s showed not activity. Even made a full recovery from Bell’s Palsy in 2008… Neuro is borderline wanting to classify me as SPMS currently. None the less I have been researching the heck outta this HSCT treatment and an highly interested in the procedure. In your experience/judgment, do you think that I would be a good candidate? I’m currently not taking any meds for the MS as I’m feed up with the daily injections and don’t see the copaxone doing anything but giving me anxiety and depression cause I feel it’s useless drug after 13 years. Your thoughts?

  6. Hi I am 50 and was DX in 1994 with RRMS and have had new lesions appear in brain and spinal card in the last 2 years. My hands are numb, shooting pains in my eyes and my balance is not the best. I am wondering if any centre would and could help me.

    1. Hi there the best thing to do is apply directly to the facilities that would treat you and they can evaluate whether you would be a good candidate. You can find their details on the facilities list on the site. Mexico, Russia, Philippines would be the ones to apply to. India may be posted as a new facility soon but we are waiting to get feedback on the first group to be treated there first. If it proves to be legitimate it is considerably cheaper than most other facilities at $30,000. It will be on the list by the end of November. If you want to learn more about HSCT and ask people questions join the face book groups. I am not sure where you are located but there is Hematopotic stem cell transplant for MS and Autoimmune diseases, HSCT Awareness, and then there are also groups for specific facilities. Here you can ask specific questions regarding treatment. Good luck!

  7. If you want to learn more about HSCT and ask people questions join the face book groups. I am not sure where you are located but there is Hematopotic stem cell transplant for MS and Autoimmune diseases, HSCT Awareness, and then there are also groups for specific facilities. Here you can ask specific questions regarding treatment. Good luck.

  8. I was diagnosed in 1995, and are now 2nd progressive, I walk with a walker and have bad balance, I am in very good health and am very keen to be rid of this beast.

    1. Hi the best thing to do is to apply to the facilities that are listed on the World Wide Facilites list. Your options would be Mexico, Russia, Philipines and possibly India which is not on the list yet as they are treating their first group at the moment and we are waiting to get feedback before approving the facility. It is considerably cheaper at $30,000 than any of the other facilities. When you present your MRI info and your specific details they can let you know whether they think that you would be a good candidate. If you want to learn more about HSCT and ask people questions join the face book groups. I am not sure where you are located but there is Hematopotic stem cell transplant for MS and Autoimmune diseases, HSCT Awareness, and then there are also groups for specific facilities. Here you can ask specific questions regarding treatment.

      Kind regards, and good luck,

  9. I am 47 with secondary progressive, I would be very interested in Mexico, please send me information as how i apply. With thanks Dehra

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