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Where is stem cell therapy, today?

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    #16
    I was just searching the Dr. Richard K Burt site and I realized that there is nothing under the picture of the
    Chicago skyline. I feel like an idiot that I can't find the info that I seek. As far as coming out of the closet vis a vis future employment being hampered by one's history of having MS, that is a legitimate concern. I don't know how I feel about that issue. That a person could find a way to beat MS and then find themselves unemployable seems ludicrous.

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      #17
      Hi Jerry-

      Open your FB, and in the "search for people, places, and things" box copy and paste Hematopioetic Stem Cell Transplant - MS & Autoimmune Diseases. This will create a drop down menu, it is the first option. Once clicked on, a green "join group +" should be visible, click on that and you should be added within 24 hours. You can also Google search George's blog, where you can read about his treatment/scientific literature review as well as Dave Bexfield's Active MSers (with his transplant story and insurance approval) while you wait.

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        #18
        Hi Jerry: there's probably nothing under the skyline because you have to join the group first. After you do, you'll be able to see the posts (at least this is what I'm thinking). All you need to do to join the group is to hit the "Join Group" button up at the top right of the page. The administrator will then review your request and, so long as they don't think you're a spammer, grant it so you can have access to all the posts, blogs and files in the group.

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          #19
          Thanks for your help, guys. I spent a little more time fooling around on FB and I think I have joined the groups. Dyin_mylin, I think you pointed me to a page that is different than the Dr. Richard K Burt page that I was looking for. I think I joined, anyway. A button at the top of the page says 'Pending'. I guess that's OK. Time will tell.

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            #20
            CaroleK,
            I have been on the Dr. Richard Burt etc. site and 2 other stem cell therapy sites and I saw your post about this board. It is surprising that MSer's don't spread the word about their success in 'throttling' the MonSter through HSCT. Thanks for trying to spread the word. Continued good health.

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              #21
              I hear you, Jerry

              One of the responses to my request on the two FB groups might be a main driver as to why people don't come back here to share: because they find this, and other MS forums depressing. I get it: I've seen many posts here and in other forums where people are scared, depressed and even suicidal. MS isn't pretty, and all the emotions that go along with having a chronic disease for which there is no cure are understandable, but not always a joy to read. I do think, however, when you explore MSWorld a bit, you'll find all sorts of perspectives and a great deal of curiosity and optimism about the future of treatments for MS.

              Another thing that, I think, stops people from coming back is, once they've undergone HSCT, they just want to get on with living their life. They turn to the FB forums dedicated to HSCT to ask questions and share improvements, challenges, etc., and they develop a sense of kinship in a way with other HSCTers. I feel that kinship myself in the Dr. Burt group.

              I did, however, made a promise to myself when I underwent HSCT to report back here periodically. If it wasn't for MSWorld, I wouldn't have found out about HSCT. I certainly wasn't being given any information from my neurologist!

              I'm slated to return to Chicago in March for my 6 month follow up. I will update here with the results of this when I return. So far, so good, but the MRI is the real litmus test. I wish you the best with your health. Enjoy the holidays!

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                #22
                JerryD, I have similar questions and frustrations.

                I did post on Dr. Burt's study Facebook page asking for people to comment on their experiences 5+ years post-treatment, per my doctor's request. I was pointed to blogs and still could not find more than a few people who shared how they were feeling months and years later. I also got some disrespectful remarks about following my doctor's advice to research this issue, so it works both ways.

                That's not implying it's a big hairy secret, but observing the lack of solid information around the whole procedure in all its current forms. The super-optimistic-positive attitudes are great as I understand the need to encourage people to participate in the study, and admire people going through it for all our sakes. But we also need to balance that with solid information so we can all make the best and timely treatment decisions for ourselves as all of these options start coming on the horizon (with some very willing to use us as $50K/year guinea pigs). I really hope we'll see something proven and positive about stem cells in the next five years.

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