Neuro, says progress is to slow.

    • Anonymous
      April 22, 2008 at 1:00 pm

      Neuro is having an MRI done to see if anything is squeezing the nerves in my spinal cord. He says by this time the tingling I feel from my ribs to my feet should be below the knees. I am able to use a walker for short distance and a cane at home. I am in a wheelchair most of the time but can take steps in my home. My hips do not have movement in them so my steps are very stiff.
      Does anyone have comments on time limits that tingling goes away? Any response is welcome, with thanks.
      dx GBS 11-07

    • Anonymous
      April 22, 2008 at 1:14 pm

      I am 25 years post GBS and my tingling has never gone away. It peaks and ebbs, some days being worse than others. It was just in my toes ans fingertips after the first year, but it has returned with a vengence. It is to my knees most days now and drives me nuts. Add in the little electric shocks and I am hopping all the time!!

      As most of us will tell you, there does not seem to be a right or wrong with this illness and I believe it is a life long battle even when we are told we are almost 100 percent. I don’t believe there is any such thing, but we do learn to live with the residuals.

    • Anonymous
      April 22, 2008 at 1:40 pm

      Thanks for your response. I get those electric shocks, mostly in my lower back. I have learned from reading the forums, that most do not get 100 percent. Being recent with GBS, I miss my old self and want her back desperatly at times.
      dx GBS 11-07

    • April 22, 2008 at 4:57 pm

      You are so new to this still. At 6 months I was still feeling pretty miserable and I had a “mild” case and could more or less walk unaided the whole time…slowly and shuffling, but on my own nonetheless. I still had numbness and tightness and tingling even in my face and throat as well as arms, hands, legs, feet. It was better than it was in the very beginning, but still not gone. Now I am almost 2 years post onset and I still have tingling in my legs and feet. Sometimes weakness too. More of a feeling of weakness instead of actual weakness if that makes any sense. Like others will say, some days are great some are not so great. I have a feeling that in a couple of more months you will feel a bit better, and a couple more after that even better. It takes time and patience (boy is that one hard to hold on to!) but it does get better a bit at a time. I will say a prayer for you in the hopes that you feel better and walking becomes much better for you. I miss my other self too, and I really hope she isnt gone for good. It is hard to accept the new us without accepting the loss of what was. I am not at that point yet and still get very upset at myself for having limitations…even if I look totally normal!


    • Anonymous
      April 23, 2008 at 1:03 am

      13+ years and still tingling ~ especially when I over-do! No doctor can give a “time line” for this disease and “supposed” recovery; it’s unique to each individual. You are still very early in the game. I wish you well.

    • Anonymous
      April 23, 2008 at 12:41 pm


      There isn’t a day that goes by that I don’t in some way grieve for the person I was before…but that being said, I have come to love the person I am today and she is pretty cool. I have used everything I learned over the past 25 years to be good at my work, to foster awareness of illness and the need for being proactive when it strikes.

      Be good to yourself! A new day has dawned and so has a new women. Make her special!

      Hugs and love.

    • Anonymous
      April 23, 2008 at 5:37 pm

      This thread has sparked something in me. I don’t know what. But yesterday while I was ‘working out’ on the new Robotics equipment place, I kept telling the young girl that was helping me “11 years ago I was different”, etc., etc.

      How can we learn to accept who we are now and quit wishing we were like we used to be??? I think I can understand why we are all saying/doing this, but dang it, I’m tired of saying it and would really like to let that go. I think this is a good subject to bring up with my new therapist. I’ll post when I get anything worth sharing.

      Oh by the way, Shirley, if you can learn from our mistakes – or what we have done over the years of not so easily (or ever) accepting the change in our bodies, you will do great. These residuals keep us on our toes sometimes – figuratively and literally. I’m buzzing away here in OKC and hopping some with those zaps.

      Be well (as you can be),

    • Anonymous
      April 23, 2008 at 6:13 pm

      Chrissy, I would love to hear what your therapist says! For me, what I mostly grieve is the loss of my voice. I used to have a good singing voice but my vocal chords were damaged from being intubated too long before a trach was done. I can’t sing worth two hoots 😀 now and I come from a very musical family so it is hard to hear them all sing together and not be able to participate. I also struggle with volume so can’t speak in large, noisy crowds, i.e. a dance or a wedding. I often don’t get heard so have learned to not say anything which can make for a lonely time. If I try to talk, I end up with so much discomfort, so it is the lesser of two evils, so to speak.

      I do miss those things, but the joy I get from telling my story to care givers lightens the load, and the more times I tell it, the better I feel. I don’t want to forget who I was because then how would I know how much I have changed today? For the better, in most ways, I might add. I think we are normal to grieve. I miss the old Janet, but would I want her back? Not really….well, maybe the good health and the singing….but not the experiences and learning that GBS has given me.

      Truth be told, I think we miss lots of things in life that are not the way they were. I wish my kids were small again so I could cuddle them. I miss that feeling! I wish we had bought that house back in ’74. I wish I had kept my weigh off when I lost it 10 years ago. I wish….I miss….

      Hugs to everyone!;) 🙂

    • Anonymous
      April 23, 2008 at 9:51 pm

      Hello all. I’m a new member (mild GBS dx’d Nov 07)and appreciating the wisdom and experiences I’m reading. I also have some professional experience providing counseling. I’d like to make a comment and suggestion. First, grief is an on-going process with no time limit. Just because you’ve already been through the stages of grief (shock, anger, denial, bargaining, acceptance, etc & not in that order) doesn’t mean you won’t repeat a stages or stages. It also isn’t a linear or orderly process. Second, my suggestion, do talk with your own therapist about your feelings, or look up the stages of grief for yourself. They were originally consider for people with terminal illness, but now are consider to apply to many forms of grief — yes even loss of personal abilities. God bless.

    • Anonymous
      April 24, 2008 at 1:13 pm

      To all of you that responded to me.
      You give so much of your selves from your experiences so that you can help others. All of your comments has not only helped me at a time that I needed it but has given me much admiration for each of you.
      Thank you all so very much.