Announcement

Collapse
No announcement yet.

The only one real cure for MS

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

    It wont work on progressive MS because there is no inflammation. I believe progressive MS is a different disease vs RRMS and SPMS.
    Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

    Comment


      Your observation about SCT not working on PPMS may be correct. But that isn't stopping the Tisch center from performing SCT using a different type of stem cells on select 'progressive' patients in a trial currently ongoing.
      Meredith Viera's husband, Richard Cohen, is in that trial. His stem cells were harvested a couple of months ago and they will be replaced soon. I wish him the best.
      Any info that you. or anyone, can share on SCT treatments are welcome.

      Comment


        I sure hope they are making some progress. This disease is so scary. I am not surprised her husband is on the study, yes they live in NY etc.. but I am sure he got on because of her.
        Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

        Comment


          Originally posted by Katje View Post
          It wont work on progressive MS because there is no inflammation. I believe progressive MS is a different disease vs RRMS and SPMS.
          i have wondered the same and the thought of that makes me so sad. There is already zero treatment for PPMS and if it is a different disease, then treatment is even farther off than it is now.

          Comment


            Just talked to Bernie in Seattle this morning. First of all she stated all the info that George Goss is putting out is only 60 percent accurate. She actually knows him. She said he doesnt really understand the science and misleading a lot of people. She said it's still to be determined if this really is a cure for MS. Right now they really cant say it is.

            George Goss claimed he was SPMS. According to Bernie nobody with SPMS stayed stable, so hopefully George will remain stable, but if he doesn't I wonder what he will say about HSCT
            Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

            Comment


              I am so torn because I just talked to Chicago and was told Dr. Burt knows who he can help and they want a new MRI again because I have inflammation. I am so confused, who do I believe?
              Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

              Comment


                I am always eager to read your posts, Katje. It seems that you are doing a lot to get the best treatment available and seeking out a lot of good information. Good luck . Keep posting.

                Comment


                  I keep waiting for something better than HSCT. I know there has to be. I feel this treatment is too extreme and not as eager to do this as others. Maybe because I am not desperate yet, or I dont really have disability or maybe I know how damaging this is to the whole body years after which is something most people dont stop to think about.

                  However I don't want to miss the boat and kick myself years later if the MS does progress and it's too late for me.
                  Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

                  Comment


                    Do all you can now: the supplements, the diets, the exercise, the yoga, the meditation, the acupuncture, the sleep, the stress reduction, the 'attitude', maybe even the MitoQ.

                    While I totally believe that SCT is the promise we've been hoping for I just don't think it is quite ripe yet. I still think it's another 10-15 years away. I hope I'm wrong.

                    Comment


                      I agree with you Zuzus, but some of us dont have that kind of time. I already had this for a long time and I am getting quite old now.
                      Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

                      Comment


                        Understood Katje. It's a difficult position to be in no doubt.

                        Comment


                          Well I just got my new MRI report and I have new lesions and the old ones from the last attack are spreading.

                          Yippie hi ho.

                          Amazing I look normal considering my brain looks like rotting swiss cheese.
                          Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

                          Comment

                          Working...
                          X