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    Stem Cell therapy

    My son in law is a sweetie. He reads and reads about MS and tries to talk me into everything he finds concerning MS therapies. Now he's on to Stem Cells.

    I've read a lot of articles that sound pretty positive and it sounds like people are having success with this. But, I am 67 years old and have OTHER problems besides MS. My SIL thinks I should go to some other country where they can do the Stem Cell thing and pay whatever it costs to get me 5 years free of MS.

    First of all... I do NOT like to travel. Second, I'm not really sure just how successful this treatment has been for people. I'm not PPMS. So I don't feel like I am "bad enough" to be taking this kind of therapy. I think my Osteoarthritis, Graves Disease, IBS, Gastritis, Spondylosis etc would not benefit from this stuff. And truthfully, those areas are causing me the most trouble at this point. The MS symptoms that are especially hard for me to deal with are mostly the dizziness and fatigue.

    Anyway.... does anyone have any information or first hand experience with SC Therapy? I love my son in law and appreciate his concern. But I'd like to be able to convince him to back off and stop trying to push me into things like this.
    Marti




    The only cure for insomnia is to get more sleep.

    #2
    Hi Marti - I get this all the time. Well intended people send me information all the time. Until they find something that is clinically proven to reverse the damage done (I'm SP) and doesn't cost and arm and a leg, I let it go and thank them.

    Some may disagree with me here, but that how I view it. At this point in time, it is still experimental and again, jmho, I don't wish to be a guinea pig.

    We do have a forum about stem cell therapy here https://www.msworld.org/forum/forumd...m-Cell-Therapy

    Read up to stay informed! https://www.nationalmssociety.org/Re...%E2%80%93-HSCT
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

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      #3
      There was a discussion on this at the December RMMS Center conference, and the doctors there were pretty cool to this treatment. They said it is most effective in young patients with RRMS. They said if you want to give it a try, ONLY try it in the US and in a well known clinical trial. I can load a link to the conference if you’d like further information.

      Comment


        #4
        Originally posted by ru4cats View Post
        There was a discussion on this at the December RMMS Center conference, and the doctors there were pretty cool to this treatment. They said it is most effective in young patients with RRMS. They said if you want to give it a try, ONLY try it in the US and in a well known clinical trial. I can load a link to the conference if you’d like further information.

        Thanks. I really am not interested in this. I was hoping to find information to pass along to my son in law. He's a science nerd and reads everything about MS for my sake. I love him so I usually just listen, nod and then forget it.
        Marti




        The only cure for insomnia is to get more sleep.

        Comment


          #5
          Originally posted by marti View Post
          Thanks. I really am not interested in this. I was hoping to find information to pass along to my son in law. He's a science nerd and reads everything about MS for my sake. I love him so I usually just listen, nod and then forget it.
          Maybe I'm missing something in print but "Thanks. I really am not interested in this." sounds dismissive of someone who took their time to offer something that in fact has information you could pass along to your SIL. It isn't what you want to hear I suppose but a simple thank you would have sufficed.
          He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
          Anonymous

          Comment


            #6
            Hi Marti,
            I understand your SIL's interest in Stem Cell therapies. But, there are scientific facts and B.S.! Getting the facts is difficult to do.
            I have been posting on this board for nearly 10 years, barking about this subject. If you are truly interested in Stem Cell therapy information, all that you have to do is get to the bottom line of Dr. Richard Burt's clinical trial data. He has been conducting clinical trials on stem cell therapy to treat MS for over 20 years. I haven't been able to uncover any information that was useful or that I could easily understand. And Dr. Burt has been THE PIONEER of the stem cell therapy along with several other researchers/doctors worldwide.
            I hope that you get the info that you are looking for. Good luck

            Comment


              #7
              Originally posted by Jules A View Post
              Maybe I'm missing something in print but "Thanks. I really am not interested in this." sounds dismissive of someone who took their time to offer something that in fact has information you could pass along to your SIL. It isn't what you want to hear I suppose but a simple thank you would have sufficed.


              I think I am missing something too. I did thank my SIL... over and over. But he told me he was going to hound me until I watched a podcast on this subject. So I did and I even went as far as downloading the PDF file of the doctor's book. It takes me a long time to read pages and pages of this technical stuff and I never grasp it all. But anyway, I love my dear son in law to the moon and he knows I appreciate him. There is not much info on MSWORLD about stem cells. So I turned to the group in case anyone had gone thru the therapy and could tell me "yes or no" on the results.
              Marti




              The only cure for insomnia is to get more sleep.

              Comment


                #8
                Contemplating

                I've been looking around and I am thinking of saving my money but I don't wanna waste $20,000 CAD. But read and watched good reviews so I'll try and save the money as I'm still RRMS and newly diagnosed I have a little time (I hope).

                Comment


                  #9
                  THere was a time when stem cell therapy held a lot of promise but there haven’t been many strides made lately.

                  What I got out of your question was the relentless pounding of “have you tried...?” This vitamin, that vitamin, this diet, this exercise, using a juicer every day..acuunture...

                  Everyone wants to help. They want THEIR suggestion to be what cures you. My theory is that we as humans are uncomfortable with the concept that MS is still an incurable disease. There is a void so they fill it with “suggestions”. How to handle them is a different story. Simply saying thank you might not be sufficient for some people to back off. They will persist.

                  I’ve never tried this but it would be tempting to say, ‘I’m enjoying having MS. Wouldn’t want to change a thing.’

                  Comment


                    #10
                    Originally posted by palmtree View Post
                    Everyone wants to help. They want THEIR suggestion to be what cures you. My theory is that we as humans are uncomfortable with the concept that MS is still an incurable disease. There is a void so they fill it with “suggestions”. How to handle them is a different story. Simply saying thank you might not be sufficient for some people to back off. They will persist.

                    I’ve never tried this but it would be tempting to say, ‘I’m enjoying having MS. Wouldn’t want to change a thing.’
                    I agree they mean well and I think we can be our own worst enemies with regard to minimizing the impact this rotten disease can have on our lives. Certainly the medical community did us no favors for many years by minimizing the familial component.

                    I love your idea and one day might just say "No thanks, not needed, I'm loving the MS."
                    He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
                    Anonymous

                    Comment


                      #11
                      Lol! Palm Tree and Jules!

                      We need Tshirts and wristbands that say. "Living with MS and Loving it!" Chances are, anyone struggling with a chronic disease is going to be more informed about their own condition than most anyone else.

                      When someone gives me unsolicited advice, I just try to accept it graciously and move on. It gets old though. This is one of the reasons I became more private about my condition over the years. Instead of advice, I wish someone would offer to walk my dog, dust my house, take my teenager shopping, etc. etc.!
                      Tawanda
                      ___________________________________________
                      Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

                      Comment


                        #12
                        Medical tourism

                        I am a 44 year old 22year MS chick veteran. Needless to say I’ve tried everything including an expensive trip like what he’s thinking about.
                        The fact that I now use motorized wheelchair or as my son called it moms gogo cart does not bias my opinion on why it isn’t going to be the answer to myelin repair.

                        I am blessed to be a patient of the world renowned expert of ms Dr. Sadiq here in NYC. He’s also waiting for construction to finish on the new Stem Cell research lab where I and 39 other patients he selected to be in his phase 2 FDA approved intrathecal bone marrow transplant of stem cells. It’s the only FDA approved trial using stem cells and was so successful in phase 1 it was fast tracked for approval!
                        I always say I do not plan on joining the NYC ballet because I think I will have every ability MS stole from me. I refer to him as my Dr. of hope. He gave me back my ability to hope. That’s what makes you strong.
                        I changed MS docs 7 years ago and cannot express what a humble and compassionate person he is. It amazes me to think about his brilliance. Knowing him as a person and seeing his work is why I regret thinking and wasting money and my dreams crushed when my MS didn’t change and kept progressing after my mom an I traveled chasing a dream.

                        Your son in law is exactly like all MSers saying why me and there’s gotta be something I can do no matter what it takes. It’s not crazy to think about doing this. Many of us did the same thing. As I said I am not against it based on my own experience. I am against it because I am a patient of a world expert in MS who has a passion that drives him to figure MS out and my opinion now if he’s not doing it for his tens of thousands of patients it isn’t right. I put my trust in him and nothing can convince me otherwise. If anyone will know how to repair the booboos on my brain it’s him. If not then it can’t be done but I know he’ll die trying!
                        His research ins on the Tisch Multiple Sclerosis centers website. [/SIZE]

                        Comment


                          #13
                          Marti Stem Cell Works! Hence my new screen name.

                          I was dx back in 09 and had stem cell therapy Jan 2nd, 18. I noticed a difference in two days. I've always been able to walk, learning on walls( I mean holding up walls) and walking to the right. Lights and noises drove me crazy. I don't like getting tooooo excited, but I can't help it. I use to walk down stairs with a of difficulty stepping sideways and death gripping the rails going down. Now when I walk down stairs I'm smiling ear to ear. I'm making games out of it, I put one foot in front of the other walking downstairs and I don't hold on. It's funny, every time I get to the bottom I have the biggest smile on my face. When I take a shower now, I can close my eyes and open them and I'm not falling down. I know that it's only been two months for me, I can't wait to see if anything else comes back.
                          I definitely recommend the procedure.
                          Good Luck
                          Jeff
                          My old moniker was "Deer in Headlights" because that's how I always felt.

                          Comment


                            #14
                            US Stem Cell Clinic is charlatans

                            Hello Marti


                            Maybe after seeing this, your son in law will change his mind.


                            You have to be very careful selecting the clinic for stem cells injections. And here is why. The outrageous facts I've found.


                            The chief scientific officer at one of the most famous stem cell clinic, the US Stem Cell Clinic, doesn't have any degree in medicine and cell biology. Dr Kristin Comella is a virutal PhD. I was literally shocked.


                            She touts that she was voted #1 on The Academy of Regenerative Practices list of top 10 Stem Cell Innovators. The clinic and Kristin Comella claim to treat such conditions as diabetes, multiple sclerosis, Parkinson's disease, brain trauma, chronic obstructive pulmonary disease (COPD), whereas their chief scientific officer is a doctor who went to a medical school in a mini-mall!


                            Recently she received her “PhD” from a virtual non-accredited university based overseas. Is nothing sacred anymore??


                            They charge $5-15,000 per procedure. I'm sorry but online diploma is below my expectations for any procedure, especially for the one that costs so much and can actually left me blinded.


                            On the Internet you can find many articles with other shocking facts about this clinic. How three women lost their sight after the procedures at US Stem Cell Clinic.


                            The worst part is if you type into Google “Kristin Comella” you’ll see only ‘clean’ results. Like she is a lamblike person.


                            But if you type ‘Kristin Comella patient blinded’ you will see the real face of that clinic and its chief scientific officer.


                            Be very selective when choosing the place where you are about to spend your money and receive any medical assistance. Always ask whether the doctor is MD (medical doctor) or DC (Doctor of Chiropractic), where he or she received the degree and other questions which will help you to conclude that the clinic and the doctors are trustworthy. Don't be complacent about stuff like this.


                            Good luck and take care

                            Comment


                              #15
                              The problem is this is ,just as every other stuff they come up with,for RRMS

                              when you have people with SPMS or PPMS paying so much because they hope it will make their situation better and the clinics just keep quite, i call it giving false hope.Explain it gives results only with rrms patients,and then let the patients decide

                              I recently got to know this woman i told about in other threads,she went through stem cell 15 years ago,she had an agressive form of RRMS,ever since then she has no signs of MS.i call it a miracle,i called it cure for rrms at my appointment but my doctor is not so easy with that so he told me ms is still considered an incurable disease and will continue for a long time,but keeping it away is good enough.

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