A Member Needs Us, Emily Is Relapsing, Send Cards

    • Anonymous
      June 5, 2006 at 6:38 pm

      Do those from the old forum remember “Emily’s Story”. Emily probably was one of our members who was not expected to survive GBS/CIDP. Emily’s mom Peppie did most of the posting on our old forum about Emily. After being treated with cytoxin, Emily was walking again and she was doing great. I just received word from Peppie that Emily has relapsed. Emily is young, only about early twenties. Emily’s computer is down and her phone is down, so we can’t contact her. I think it would help Emily if we send her cards. She needs encouragement.
      Send cards to Emily’s mom
      Peppie and Emily Goevert
      2140 Princeton Place
      St. Louis, MO 63117-2425

      or Peppie is a member here, PD2140, but she may not check back to read.

    • Anonymous
      June 5, 2006 at 7:09 pm

      Will this address be sufficient if I am sending from overseas?

    • Anonymous
      June 5, 2006 at 7:52 pm

      For those sending a card from outside the United States, I am sure all you need do is to add USA to above address.

    • Anonymous
      June 5, 2006 at 10:36 pm

      Hi Everyone,

      After weeks of no internet service, it miraculously came back on today. I have really missed and needed you guys. As many of you know I have had quite a hard time with my CIDP. I am kind of in a state of shock right now, I knew it is possible to relapse, but I especially did not think it would come so soon. After a year of failed treatments and two years of working treatments, I recovered from complete paralysis and a ventilator with the ability to walk on my own and take care of myself.

      I have been able to walk on my own for about 6 months now and have felt better than ever until 2 weeks ago. I have been in denial for the past 2 weeks, passing my symptoms off on over dueing it and being tired until I got up this morning and could barely stand up from out of bed. I first got numbness in my hands, then feet, and now I am falling all over the place and so weak I can barely stand up from a chair

      I am terrified to see my nuero tomorrow because I don’t want to hear that I am relapsing even though I know I am. The only treatment that works for me is chemo and I am not ready to go through it again. I just started to get back into life and am devastated because I have come to the realization that this might be how my life is going to go.

      Thank you so much Liz for starting this post, without my internet to talk to you guys I started to panic, I really treasure our connection with one another. I could really use everyones encouragement and letters right now, I am so upset I am not sure what to do with myself.

      I will keep you posted on how things are going,

    • Anonymous
      June 6, 2006 at 2:46 am


      It is good to see that your internet is up and working again. I posted a card to you today and hope that you will get it soon. I have never posted a card to the United States and so I dont know how long it will take to arrive.

      You sound like you are having a bad time at the moment. I am so sorry to hear this. Keep fighting this and ask for help from your loved ones when you need it. Your mum sounds like a lovely lady and I am sure she will help you through the bad times. Keep your chin up and good luck with the neuro tomorrow.

      Best Wishes

    • Anonymous
      June 6, 2006 at 11:38 am


      Just keep hanging in there (I know that is easier said than done but…you have firends and family that love you and are rooting for you. Keep us informed.

      You are in my prayers

    • Anonymous
      June 6, 2006 at 12:55 pm


      Post sent to, or from South Africa takes anywhere between 1 to 2 weeks, maybe Austrailia will take around the same time.

    • Anonymous
      June 6, 2006 at 8:32 pm


      I don’t know you personally, but my heart goes out to you soooooooooooo much. I will be sincerely praying for you.

      Keep fighting!!
      You’ll win! 😉

    • Anonymous
      June 6, 2006 at 11:01 pm

      Thanks everyone for your thoughts and prayers. On Thursday I am going to recieve an 8 hour infusion of a combination of Methetrexate and Cytoxan. Hopefully this will do the trick, along with adding more immunosupressants. I hate to have to wait, but they said they could not do it any sooner. My hands feel like stubs and I can barely get around with my walker, but I am sure after I recieve my infusions I will feel better.

      Thanks Again,

    • Anonymous
      June 6, 2006 at 11:16 pm

      god bless you!!!!!!

    • Anonymous
      June 7, 2006 at 12:09 pm

      Good luck tomorrow Emily, you will be in my thoughts.


    • Anonymous
      June 7, 2006 at 11:18 pm

      emily, my thoughts and prayers are with you. keep thinking positive, you’ll get to feeling better in no time.

    • Anonymous
      June 8, 2006 at 8:32 am

      Hello Emily,
      I am so glad that your computer came back up so that you can talk to us here. A card and a letter from me will be in the mail soon.

    • Anonymous
      June 8, 2006 at 10:42 am

      Emily, dear ~ I am so sorry for the set back. I wish that I could be there in person to encourage you. Please, don’t think about what your “future life” maybe be like; you don’t know from here. Today, this is where you are and it is enough to deal with without looking way down the journey. Please use your precious energy for healing, not worrying about tomorrow. With all the prayer thoughts from your GBS family, I hope that you can feel uplifted and not alone.
      Hugs, Judi 🙂

    • Anonymous
      June 8, 2006 at 11:25 am

      So glad to see you are posting again, and I am sending you tons of good thoughts and prayers. Having had GBS 5 years ago was bad enough for me to think about, so I pray you are on the way to recovery soon. elayne