mpocciot

Your Replies

  • mpocciot
    June 6, 2010 at 9:56 pm

    Hello homeagain,

    Thanks for your reply. I was just trying to get some hope that I could be cured.
    I know this is nothing compared to the stories we see here. I still can walk and I’m grateful for that. I do have support from people around me, specially my wife Rosana.

    I guess people don’t really want to hear complaints from someone whose pain cannot really compare to theirs. I didn’t really meant to complain but to understand the reality. If I’m 40 with CIDP what is the path ahead like? I can’t get my strength back, can I?

    If this is the way it is got to be, than I just want to live as best as I can with my condition. You see, so far I’ve been trying to live a normal life, but I see that it is not normal anymore. For one, I need different shoes, the ones that I have always used are not good anymore. I fell on the street many times but only now I realize I can’t recover if I trip on something or twist my ancle, I need firmer shoes. We will build a house soon, gotta make plans to have my bedroom on the ground floor, not upstairs…It is not the end of the world.

    I’m not going to give up. I have a lot to do still. Thanks for your kind words. They were comforting. Thanks again,

    Marcio

    mpocciot
    June 6, 2010 at 9:48 am

    Hello,

    It has been 5 years with CIDP and GBS before that. I feel that it is getting worse. Taking predisone (solumedrol) + IVIG once every 3 weeks and Neurontin 1800mg a day. I’m not sure about the efficiency of Neurontin; it doesn’t seem to be making a difference (on Neurontin for 6 months now). At the same time, I told my doctor, the pain could be even worse and if I stopped I would feel real pain. I would have to stop for some time and see what the condition is. Heel pain is the worse, hard to walk and stand up, even laying down the pain is strong. (Does anybody ever recover from CIDP? I’m getting the feeling that this will go on forever and all you could do is get used to it and live as best as you can, but you will never have your strength back. Please, give me your honest opinion.)
    My doctor said I should change to lyrica and prescribed some pepper oilment to rub on my feet that would cut off the vibrations and give pain relief. I haven’t started with that yet.
    It was good to know that many people here benefited from Neurontin. Now I know that it does work for some people.

    Many thanks,

    Marcio

1 2