Relapses…Common???

    • September 1, 2015 at 7:28 pm

      Hi Everyone,
      I was diagnosed around July 10, 2015. About 10 days ago the neuropathy was nearly gone from my legs and feet. Then I woke up one morning and it was back to my ankles almost like an ankle sock. Within a few days it worked it way up my legs and is now to my knees. My feel are very bad and hurt like crazy.
      Are relapses something I can expect and if so are they common and to what extent can I say it’s a relapse or something more serious?
      Honestly I’m more than a bit freaked out by this!!!
      This is the only place I know where to turn for REAL ANSWERS.
      I would love to talk to someone who has had similar symptoms.
      Thank you for taking the time to read and respond.
      Kindest regards,
      Mike

    • September 1, 2015 at 10:23 pm

      Mike, Please see my post in the thread below, I think it may have some info that could help you:
      https://forum.gbs-cidp.org/topic/pain-and-weakness-together/

      Another topic that might help:
      https://forum.gbs-cidp.org/topic/gbs-relapses-residuals-when-does-it-become-cidp/

      There may be some useful info in these surveys too:
      http://www.gbs-cidp.org/topic/patients-survey-results-into-gbscidp

      GBS usually peaks 6-8 weeks after onset, then the slow process of recovery begins. Since you are still in this period, some additional problems can be encountered, but they should be beginning to slow by now. The exception would be if you have RGBS or CIDP. Should you decide to look into PE (my suggestion) please review the following thread:
      https://forum.gbs-cidp.org/topic/treatment-options/

      Good luck and let us know what happens.

    • September 2, 2015 at 12:25 am

      Been that way for me since onset of sept. 2014

    • September 2, 2015 at 12:27 am

      And I should mention I have cidp.

    • September 7, 2015 at 12:14 pm

      Dear Mike, I just wanted to say since I’ve been ill {September 2014} I have had so many different diagnosis, so many *good” days and “bad” days that my only advice is not to ignore anything, ask a lot of questions and if you aren’t well enough yourself, find an advocate to help you navigate the doctors and insurance companies! My neurologist tells me my recovery will take up to three years if in fact I recover fully. I receive IVIG every sixth week and have been very slowly getting stronger. Having been a very active person this is a tough pill to swallow! I get up every day not knowing what it will bring but I take a deep breath, count my blessings and open my eyes. Good Luck

    • September 11, 2015 at 2:39 pm

      Thank you all for your posts. I was happy at how I was progressing and then a few weeks ago the neuropothy began to creep up my legs and is now up to my knees. Hoping it reverses soon.

      Bless you all in your recovery.

      Mike