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

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    #1

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

    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**
    Optic Neuritis: 12/2009 leading to MS Dx: 01/2010
    Copaxone, Avonex, Gilenya, presently on Tysabri
    CCSVI x2, LDN, Autologous MSC trial
    Tags: None
    #2
    Hi Anna

    That is awesome!! I will be following your progress..good luck!! (for us all!)
    Susan......... Beta Babe since 1994....I did improve "What you see depends on where you're standing" from American Prayer by Dave Stewart

    Comment

      #3
      I am thrilled to hear of this at the Cleveland Clinic. I wish you the best and want to know all about your experiences with stem cell therapy. Good luck

      Comment

        #4
        Hello Anna

        I would also like to follow your experience with the CC.

        How can I do that. I tried to follow directions,,,,,, but...

        Thank You,
        Bill

        Comment

          #5
          hello....i'm with you bill, not savvy enough to know how to follow anna but sure would like to!!!

          any help out there???


          brad

          Comment

            #6
            Congratulations Anna-

            I spoke with my neuro at the Mellen Center previously, but was not able to be involved with the study.

            I look forward to following your adventure and hope it leads to wonderful things for you!

            Perhaps with the season of miracles this will bring great news.

            Good Luck and please take care,
            Denise

            Comment

              #7
              Hello Bill and Brad,

              You can find out more about the trial at the following link. I have no idea whether they need more participants but you could call the number found in the link below. It appears they may be recruiting but the webpage has not been updated since Oct 23; if you are interested call right away. Good Luck!

              **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**

              Comment

                #8
                i'm just looking to follow anna's journey but can't figure out how to do that thanks to moderator deletion of url...

                brad

                Comment

                  #9
                  BILL

                  CLE IS ONLY ON 18 OR 19 PATIENTS? WHEN THEY TOOK THE BLOOD FROM YOU, WAS IT THRU A VIEN OR THRU THE BONE MARROW?

                  I AM A PATIENT FOR DOCTOR FOX AT THE CLE CINIC AND TRIED FOR THREE YEARS TO GET INTO THIS TRIAL, 53 AT THAT TIME BUT NEVER HEARD A WORD FROM COHEN. BUT WHEN I TURNED 56 YEARS OLD THEY DID CALL JUST TO TELL ME I WAS TOO OLD TO PARTICIPATE.
                  YOU MUST BE A PATIENT OF COHEN TO BE O THIS TRIAL....

                  Comment

                    #10
                    Myoak,

                    I'm not sure why the moderator removed the link, but please test and post a few search terms one can drop into google to find the URL.

                    6. URLs or WEB SITES: MSWorld allows posting website addresses of reputable sources, that are related to Multiple Sclerosis. Posting personal websites/URLs is not allowed. These may be put in your profile, or set as your MSWorld Homepage. (See Guideline #2 for more information concerning Member’s Profile)

                    Here's the link
                    http://www.msworld.org/guidelines

                    Comment

                      #11
                      "stem cell studies in multiple sclerosis" go online to clinical trials. gov, click the search box and enter that phrase.

                      Strange that the specific link to the specific trial mentioned in my earlier post was shot down by the mods because it was the specific link you are looking for and was sourced at the clinical trials. gov website, also. Not a big deal, the world isn’t perfect, mods generally do a good job.

                      But it worked out ok, Big A because now you can look at 8-10 stem cell trials some of which appear to be recruiting, if you are interested.

                      Also, if you are investigating possible treatments don't neglect looking into LDN. You will have to research it yourself because your neuro will know little to nothing of value about it. Naltrexone came off patent in 1985, low-dose naltrexone (LDN) costs about $30 a month so there is no money in it for big pharma. I have spent multiple hundreds of hours doing my own research reviewing LDN studies from 1985 to the latest one published earlier this month. Research published in the last two years especially, gives credence to hundreds of anecdotal reports from the prior 3 decades clarifying the specific mechanisms through which LDN functions.

                      LDN merits your attention if incredibly safe, inexpensive, and POSSIBLY having effectiveness in MS are part of your criteria. Emphasize "possibly" because only comprehensive trials can prove effectiveness beyond a doubt. Of course, no drug company is going to spend the millions of dollars necessary to find out. In fact, they are more likely to be blocking a drug, if they don’t own the patent for it. For the most recent example, look at Teva’s action to block BG-12 coming to market. http://www.globes.co.il/serveen/glob...did=1000813353

                      LDN and its effect on the immune system MAY benefit MSers but LDN CLEARLY benefits many with Crohn’s disease. The Phase 2 trial results using LDN published by Dr. Jill Smith at Penn State said 88% of Crohn’s patients showed significant improvement, 45% achieved clinical remission. Here’s the link:
                      Therapy with the Opioid Antagonist Naltrexone Promotes Mucosal Healing in Active Crohn’s Disease: A Randomized Placebo-Controlled Trial

                      Dr. Jacquelyn McCandless was spectacularly successful using LDN to prevent the onset of AIDS symptoms in HIV+ patients in Mali. 39 out of 55 (71%) subjects completed the full program w/o AIDS symptoms, side effects or enough loss of CD4 count to warrant initiation of ART medication. That study was published by the Journal of AIDS and HIV Research October 2011.

                      MS, Crohn’s disease, and HIV affect the immune system. LDN works effectively in two and IF funding can be obtained, LDN MAY be found have effectiveness in MS, also.

                      Sorry Big A, for such long response.

                      Comment

                        #12
                        The Cleveland Clinic's stem cell trial for MS patients has 25 participants. I just read the paper on 'inclusions' and 'exclusions', an hour ago.
                        Unlike the clinical trial (HSCT) being performed at Northwestern, one with progressive MS could, conceivably, be included in the Cleveland trials. I have been emailing the folks at these institutions, with the hope that I may be given the opportunity to participate.
                        The response that I received from Northwestern is that Dr. Burt, some years ago, had performed the procedure on progressive MS patients with little or no positive results. That means that my case is of no interest to them.
                        i have been on LDN for 3 years and it does help me sleep more soundly, but I do not believe that LDN is anywhere near a curative measure. It is, at most, a good, safe treatment. One of many 'band-aids' in the treatment of MS.

                        Comment

                          #13
                          Anna's blog?

                          Has anyone been able to track down Anna's blog? (It's not in her profile nor can she be privately messaged).

                          Sure would like to follow along. If anyone has been able to find her blog, would you please message it to me.

                          Comment

                            #14
                            Search word from the wise and you will find her blog.

                            Hope that helps.

                            Comment

                              #15
                              Who is this? They only posted twice to tell us they are in a stem cell study and then disappeared.
                              Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

                              Comment

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