Possible CIDP

    • March 16, 2020 at 1:08 pm

      Hello everyone,

      I’m currently in the diagnosis phase of figuring out why I’m having some muscular issues for about 1 year. My symptoms include muscle pain (at rest) and increased pain upon usage, fatigue, muscle stiffness and twitching, sporadic tingling in hands and feet. Objects are becoming more difficult to lift and feeling heavier. I have been through the extensive blood work up by my PCP which revealed no concern.

      Neurologist performed 2 EMGs in 12 months – no pathology. Lumbar Puncture revealed elevated protein in CSF (74) and other blood work proved positive for Contactin-1. Currently going back for additional/follow-up blood work today. Prior to this beginning I was a active 58 year old male.

      If any of you have experienced symptom patterns this, I’d be interested in your suggestive direction/course of action to take. If this is not the type of forum for this type of post, please let me know.

      Thank you very much!


    • March 16, 2020 at 3:47 pm

      If you have had this for a year it isn’t likely to be GBS or RGBS. The elevated protein would seem to indicate CIDP or one of its variants. An NCV test (which might have been done with your EMG?) can help identify certain neurological conditions. Please see the following thread for more info about an NCV study:

      Alpha lipoic Acid

      Some other informative diagnostic and treatment options are listed in the publications below:

      Good luck getting to the bottom of your condition.

    • June 4, 2020 at 10:26 pm

      Did you do a MRI? It could be MS.

    • June 12, 2020 at 10:03 am

      I have to agree to Jim-LA.
      GBS proceeds differently than what you describe.
      It has a ascending phase – plateau phase – decending phase.

      From what you describe, it might be a form of CIDP, the chronical form of GBS which proceeds fluctuating.

      I’ve had GBS years ago and have been diagnosed with CIDP a couple of months ago.
      It started rapidly progressing end affected sensing, agility and strenght, which now after treating it with IVIG decreased to fluctuating sensing.

      To sort it out, there’s no way around MRI and liquor testing.
      None of it is fun but the MRI in combination with the liquor testing are a strong base to rule out a lot of neurological issues. Whatever it is, after these two tests, there will definitely be some clarity.