Announcement

Collapse
No announcement yet.

I am Patient #17 in the Cleveland Clinic stem cell trial!

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    #16
    word from the wise

    I found her blog (thank you AMJ) she's now on Tysabri too and credits that with feeling immediate better...says the stem cells are circulating in her body
    Susan......... Beta Babe since 1994....I did improve "What you see depends on where you're standing" from American Prayer by Dave Stewart

    Comment


      #17
      Originally posted by Camsue View Post
      I found her blog (thank you AMJ) she's now on Tysabri too and credits that with feeling immediate better...says the stem cells are circulating in her body

      If she is on Tysabri now, doesn't sound like a success to me. Not interested in searching for her blog, she didn't seem to want to share too much with this forum except that she was having a stem cell transplant and disappeared.
      Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

      Comment


        #18
        To Katje's point, what is the purpose of continuing on with DMD's after having Stem Cell Therapy? If you have SCT, the disease should be stopped. Something doesn't add up. Why continue with these toxic and dangerous drugs ? Everything that I have read from HSCT recipients, explains that their immune systems are re-booted and the recipients do not need any injections, infusions or immunosuppressive drugs. What goes on?

        Comment


          #19
          I did find her blog, I feel so bad for her now. She seems very positive and upbeat but it sounds like the SCT didn't work well for her. She is so young, it bothered me a little reading about her recent struggles.
          Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

          Comment


            #20
            If you read Anna's post it appears she was inviting everyone to her own website to follow her blog. She blogs about a lot of things, not only her stem cell experience. It didn't appear to me that she intended to update us here, I could be wrong about that (lord knows that wouldn't be the first time I was wrong).

            I was interested in following her progress because the procedure was similar to what I went through. I was alerted to her story through this website and I thank her for that.

            She was in a phase 1 study which is trying to assess the safety of autologous mesenchymal stem cell transplantation in people with Multiple Sclerosis. They took her own bone marrow to harvest the stem cells. Once the stem cells are ready they are implanted back into the patient. There was no chemo involved.

            The difference with my phase 1 study was that the stem cells came from a placenta. This was a study also run by Cleveland Clinic.

            From reading through her blog I got the impression that the stem cells did not halt her progression, in fact she was having relapses. Now that she is on Ty and she is saying that this is making her feel much better.

            What will the report of this study say? If she sees any improvement, who can say what that is related to.

            Regardless I wish her the best and hope she see good results from her ongoing treatment.

            Comment


              #21
              Hi Anna

              How are you doing.

              my name and I have been trying for months to get revolved in the trial with no luck.

              I was over in Poland for the CCSVI treatment but it had no lasting benefit.

              I will keep in touch and if you have any contact details for anyone at the clinic who may be able to help then that would be great

              My name is and I was diagnosed with Ms in 2004.

              I hope that you are benefiting from the stem cell therapy and I look forward to hearing from you.

              UOTE=annawisept;1384347]Hello everyone!

              I am so excited to share with you my stem cell experiences as I am patient #17 in the Cleveland Clinic trial entitled: Autologous Mesenchymal Stem Cell (MSC) Transplantation in MS

              Earlier this morning I had my stem cell infusion and so far so good - we now wait and see and get tested from top to bottom for the next 6 months.

              I have been blogging about my experience on my website: So feel free to follow along with my journey!

              I am an open book and have been given permission by my clinical staff to talk about my experiences with the study with anyone and everyone.

              Nice to meet you all!
              Anna

              **URL removed by Moderator in compliance with MSWorld Guidelines. This may be put in your Profile for all registered, logged-in members to see. Go to UserCP > Edit Details**[/QUOTE]

              Comment


                #22
                Wow, I totally forgot that I had posted here!

                So sorry to those of you who have been trying to find out how I was doing post my stem cell infusion.

                One month post infusion I had a relapse consisting of Optic neuritis. I was given 5 day IV solumedrol but it did not help and my vision kept getting worse. So after a second 5 day steroid IV 3 weeks later with no improvement, I made the decision to go on Tysabri to stop the big relapse that I was in. Basically the stem cells were unable to stop or keep up with the severity of this relapse which had probably started before or around the time I was receiving the stem cell infusion.

                I had planned on using the Ty temporarily to get me out of the relapse but I really stated to feel quite good about 6 months into taking the Ty. Then amazingly I realized that I had gotten my vision back. Like 100% back. I had endured 6 optic neuritis episodes over the course of two years, so prior to the stem cell infusion and the Ty, my eyesight was blurry and my field if vision was diminished. Driving at night was not great due to halos. I now had my full field of vision back! What happened? Well, I believe the stem cells worked to heal my optic nerve damage, while the Ty kept my relapses at bay do that the stem cells could do their work. That's just my personal opinion on what has happened.

                As far as the results of the 24 patients in the study, I know there hasn't been any formal paper published because the last patient recently finished the study. From what I do know, the objective of the study, which was to assess the safety of the stem cell transplantation, was proven as indeed safe.

                My apologies to everyone who looked for my blog although I didn't update there either as much as I should have. I hope everyone is doing well and I hope I answered some questions that some of you may have had. I believe I set my account here to accept emails from those of you who may have more questions. Or you can post replied here if you like. I will now be following this post so that I don't just disappear like I seemed to have done before.
                Optic Neuritis: 12/2009 leading to MS Dx: 01/2010
                Copaxone, Avonex, Gilenya, presently on Tysabri
                CCSVI x2, LDN, Autologous MSC trial

                Comment


                  #23
                  Thank you so much for your update! I'm just starting to study this subject, and any experiential information I can find is useful! I'm so sorry the transplant didn't work without first using chemo to lei ate the immune system. It would be such a feat to be able to use stem cells without chemo.

                  It is always such a generous thing to do to post your experience for others to learn, thank you.

                  Comment


                    #24
                    Sick maybe???

                    Maybe they got very sick. I have been a member of this site for 10+ years but was gone for about 8 recently signing on again and becoming a 'new' member.

                    For some of us, if we are very very sick, we are unable to use a computer. I hope this isn't the case.

                    Comment


                      #25
                      cancel

                      please disregard my post above.

                      Comment


                        #26
                        Originally posted by annawisept View Post
                        Hello everyone!

                        I am so excited to share with you my stem cell experiences as I am patient #17 in the Cleveland Clinic trial entitled: Autologous Mesenchymal Stem Cell (MSC) Transplantation in MS

                        Earlier this morning I had my stem cell infusion and so far so good - we now wait and see and get tested from top to bottom for the next 6 months.

                        I have been blogging about my experience on my website: So feel free to follow along with my journey!

                        I am an open book and have been given permission by my clinical staff to talk about my experiences with the study with anyone and everyone.

                        Nice to meet you all!
                        Anna

                        **URL removed by Moderator in compliance with MSWorld Guidelines. This may be put in your Profile for all registered, logged-in members to see. Go to UserCP > Edit Details**
                        Please allow me to follow you and see how effective the stem cell therapy was for you. Thanks

                        Comment

                        Working...
                        X