S.o.s.

    • Anonymous
      February 21, 2009 at 6:47 am

      Oh, my friends,
      I am so tired, and so sorry… I posted my message on the GBS adult forum and I haven’t the strength to try to type it again. But I so much want to reach out to you. Please, if you can, go and read my letter there. I need you all so very much, I need your imput, and strength and love. I can try to do better later, but I am in a bad way…
      Much love, and all my prayers to all of you
      Jo Marie

S.o.s.

    • Anonymous
      February 21, 2009 at 6:47 am

      Oh, my friends,
      I am so tired, and so sorry… I posted my message on the GBS adult forum and I haven’t the strength to try to type it again. But I so much want to reach out to you. Please, if you can, go and read my letter there. I need you all so very much, I need your imput, and strength and love. I can try to do better later, but I am in a bad way…
      Much love, and all my prayers to all of you
      Jo Marie

S.o.s.

    • Anonymous
      February 21, 2009 at 6:26 am

      Hello, my comrades in arms !
      Some of you may remember me, some may yet to know me; yet I need all of your help. I have had C.I.D.P. for 10 to 15 years, on ivig for 10. I have been gradually, year by year, developing allergic reactions to each and every brand of IVIG except for one, just barely. ( Feboglamma ) However, for the last year, even that brand my body is hating, and needs massive doses of atarax and solumedrol with benydryl to keep me from going into shock. I have been trying for years, based on what I have read here, to find doctors here who will help me get on a regime of Rituxin, and in Sept. of 2008 I found 2 such kind and supportive doctors. However,, Medicare will not approve it…..
      I am devastated; I won’t give up, but I need some ammo. Can anyone out there please,PLEASE tell me how they got their Rituxan? Or, send me their glory stories of how Rituxan helped them with CIDP ? Apparently, in California, CIDP is so rare they haven”t heard of it, let alone of a cure for it besides IVIG … now if I had MS there would be no problem…
      I am so discouraged; I was so close!
      I have been getting worse and worse, for a long while, and trying to just accept my fate. But the thought of a remission is too glorious to pass up. Please help me, my friends! Your help benefits all of us in the long run, as this information will be shared and passed on to all of us in Calif. who are in the same sinking boat! ( all 10, 20, 250 of us? )
      Thank you for being there when you are needed, much love
      Jo Galt

    • Anonymous
      February 21, 2009 at 12:20 pm

      Hi Jo. Sorry I don’t have any guesses on rituxan help. I was just wondering if you have tried plasma exchange instead of ivig, since you seem to be allergic to ivig. I know how it is to be allergic to it and feel like you don’t have any other type of treatment to try. PP might work well to help control your symptoms. I’m very similar in reaction to everything. Hope someone can give you some pointers. Take care.