Can GBS evolve into CIDP?

    • Anonymous
      January 22, 2008 at 5:06 pm

      On January 25th, I will be one year out since my diagnosis. I have had pain and fatigue the entire time, however lately both have gotten significantly worse. My coordination is not significantly worse, but I can no longer tolerate writing or typing hardly at all and for the first time in months my legs shake when walking up and down stairs. My sensations have not changed, but I have started having severe muscle spasms in my back and legs.

      My neuro said that since I am so far out, my symptoms would be related to CIDP, not GBS. If the primary symptomatic change is pain and fatigue does this make since? Would IVIG help? Should I take his recommendation of high dose Prednisone?

      I know that we are not Doctors, but it feels like we are the only EXPERTS in this field!

      thanks

      Stoney

    • Dawn Kevies mom
      January 22, 2008 at 7:02 pm

      Stoney, that is how my son presented, only we went back to the doc after 6 months as compared to your 1 year mark. We instantly started ivig and it instantly helped. I refused prednisone as my son is young and many on this site do not like it, others said it worked for them. Go to search section and enter forums with prednisone and read some responses. Personally, I am glad we do ivig.
      Good luck!
      Dawn Kevies mom

    • Anonymous
      January 22, 2008 at 9:45 pm

      I would probably ask for an EMG to compare with the first one done…assuming one was done when you were dx’d with GBS last year. The dr may also want to do MRI’s of your brain & spine & also a spinal tap.

      I realize it’s very difficult at times to distinguish GBS residuals & CIDP.You need more testing & a firm diagnosis of CIDP before trying ‘roids. If it is GBS then you MUST STAY AWAY FROM STEROIDS! Steroids can cause your GBS to get worse. Make sure it really truly is CIDP before taking that step! If it is CIDP then the IVIG should help. If it doesn’t then move onto the ‘roids. I’d recommend doing an infused steroids over oral…but that’s just me.

      Good luck,
      Kelly

    • Anonymous
      January 22, 2008 at 10:05 pm

      stoney,

      as said before me, avoid prednisone, even if cidp, which odds are against. cidpers should try ivig & pp before thinking of prednisone. the fact that most of it is pain & fatigue suggests you must rest much more lying down & do less. to be sure a comparative ncv part of the emg will let you know what you are up against. yep, ask for ivig & see what happens. take care. be well.

      gene gbs 8-99
      in numbers there is strength