Please tell me your story…GBS vs. CIDP vs. other

    • Anonymous
      May 29, 2012 at 12:23 pm

      Approximately 1 month ago, I began feeling dizzy and significant malaise, headache, flushing. This eased up and the tingling began first in my arm and then to each extremity. My arm was hit the worst. It felt heavy and dead. I experienced neck pain too. The fatigue continued. Brain and cervical spine MRI were clear for ms. 4 days ago the muscle aches were terrible, every muscle in my extremities. The fatigue and dizziness are much better but I continue to have tingling and uncomfortableness in my extremities. Is this cidp or guillain barre? I did have a preceding viral GI infection approximately 9 days prior to the dizziness. I am concerned this will be a life long struggle as my course did not progress rapidly and I was able to walk. What are your thoughts?

    • GH
      May 29, 2012 at 2:35 pm

      Have you seen a neurologist about this? A diagnosis cannot be made here. It is too early to make a long term prognosis. First, get the best diagnosis and treatment that you can.

    • Anonymous
      May 29, 2012 at 5:52 pm

      I have, she diagnosed me with GBS vs. CIDP because my case is mild in the GBS world. I am hoping this is GBS so there is an end in sight. I am still tingling with muscle pains but better. I was hoping other milder cases would share? Thank you for your response!

    • GH
      May 29, 2012 at 6:00 pm

      It’s sometimes difficult to distinguish between GBS and CIDP (or something else) early on. GBS reaches maximum progression in eight weeks or less, typically a few weeks. But your symptoms are already somewhat atypical, as GBS typically (but not always) starts in the legs and progresses upward. In any case, one month is too soon to get an idea how it will proceed, I think.

    • Anonymous
      May 29, 2012 at 8:52 pm

      Hi Heathersmansfield, my GBS was misdiagnosed because it presented so asymetrical…GBS is commonly symetrical. My symptoms started March 2012 so it’s still early days for me too. I find the pain absolutely excruciating but I am learning to adjust medication to try and eliminate as much as I can. I had an upper respiratory infection thay perceded the GBS…truthfully, I have my moments of worry that it could be cidp but I do as my neuro told me and do a little bit and then rest. It’s very difficult but I rejoice every day that it wasn’t as severe on both sides of my body…and that there was no respiratory paralysis. I am off work and expect to be for several months yet so I will check for any response from you tomorrow. I am in UK but wanted to be part of the international forum too…hope to hear from you
      Dixie x

    • May 30, 2012 at 3:42 am

      Hello Heathermansfield,

      At this time, it does not make too much difference if you have GBS or CIDP. If your neurologist diagnosed you with GBS, she presumably will not give you corticosteroids. In that case, the treatment is the same for the two syndromes, either IVIg or plasmapheresis. You are being treated, right?

      Godspeed in a prompt recovery,

    • Anonymous
      June 4, 2012 at 12:48 am

      Thank you so very much for your responses! I can’t tell you how much I appreciate this community! My latest concern is that I will have a few better days and then muscle aches and burning with some muscle twitching. The tingling continues. I definitely feel better overall with the exception of the muscle pain. Has this been your experience? When will I feel better all together? I will have nerve conduction studies and emg Monday June 11. I am so hopeful this is just a transient disease and not a lifelong disease. I will be thinking of you all too as you go through this as well! Thank you!!! Heather