cidp and backsliding

    • Anonymous
      July 14, 2009 at 7:21 pm

      new to cidp had gbs before. i get conflicting messages from this site, rehab and my doctors. history had GBS was paralyzed to my chin with some problems with sight briefly. REhab hospital for 4 months home for 2 then nursing facility for a year back home again.(intermittent hospital stsys over last year) was workiing 10 hrs a week rehab 3 times a week and driving myself. now CIDP has struck, still working and doing rehab plus 6the Y but no more driving and having problems with incontinence. My arms and legs lare numb again. still able tto type with one finger though. i had drop foot in both legs and had surgery now only wearing one leg brace on left side. trying to go with out it but twisted my ankle in the bathroom yesterday so i put the brac e back on. sofar no mention of IVIG changed neuros and he did an mri of my brain but i dont see him again until the 22 nd. i am very frustated.

    • Anonymous
      July 24, 2009 at 10:00 pm

      MRI came up clean. stil no IVIG treatments. Dr sending me to sleep study. i do h ave apea but could it really be causing these symptoms that just so happen to be the same as CIDP. I guess it could nt hurt.No driving but am doing PT quit going to Y for now. Mom wannts me to start back next week. the more i sdo the more tired i am. Yeah I know makes sense but i want to know when will it get easier. I guess from what i read it wont. It will only lprogress especially since i am not getting treatment. I suffered through GBS and was told i would make a full recovery now they are saying CIDP will progress to what extent? I guess i will talk to the new neuro but am i ready or my family ready to hear the outcome. DOnt think so. AI am more readyu today than lmy family but that could chnge tomorrow. TOday i am clear thinking but who knows what tomorrow will bring.jojo

    • Anonymous
      August 21, 2009 at 3:29 am

      Hang in there, hopefully you will have a correct dx soon. You are leading down the right path it seems.

    • Anonymous
      November 15, 2010 at 8:44 pm

      finally get ivig treatments 2 x aweek evey week. Seem to be going well. starting to notice a change. especially when it comes time again for another treatment. back in pt for a lower back issue and now will have to have foot surgery sometime in january(if i make it that long) I will be off my feet and back in a wheel chair for 6 weeks. Dr hopes i dont develop a stress fracture before than. Seems i am walking on the outside of my foot and on the verge of fraturing outside of my foot. By end of day can hardly walk. pain is tremendous. But after surgery i wont have to wear a brace. he is going to do a tendon transfer and break my heal. after that my foot will be in correct position. Seems my mom pulling up the ramp was a little premature. it should be interesting getting in and out of the house in a wheelchair with no ramp.