Diagnosis pending

    • August 28, 2022 at 2:07 pm

      Hi and thank you in advance for your feedback.  A little over 2 months ago I developed altered sensation in my toes of both feet and a couple weeks later, my fingertips began to burn to the touch.  Then, the burning sensation took over my toes and feet when pressure applied.  A few weeks later, I began to notice weakness in my legs and overall fatigue.  Today, I struggle walking .5 a mile on the treadmill even holding on.  Before this began, I was in excellent health running and weightlifting most days.  My CSF protein is high-normal, neurologic exam and EMG/nerve conduction study showed latency issues indicative of CIDP.  All other tests are normal.

      Has anyone else’s CIDP started this way?  Any opinions about steroids vs. IVIg?

      Thank you again for any feedback and guidance.


    • August 28, 2022 at 4:10 pm

      Hi Audrey,

      Hopefully, my similar story will provide you with some ideas on how to proceed. I, too, got the tingling sensation in all four of my limbs. After weakness set in, I went to the ER and was diagnosed with GBS (later changed to CIDP). A massive dose of IVIG in the hospital started me on the road to recovery. In fact, I was fine for nearly two years when all of the sensations came roaring back, and even another massive dose of IVIG didn’t help. It was at that time that my neurologist suggested adding oral prednisone to my treatment. Between the IVIG and prednisone (which has now tapered down from 60mg/day to only 2.5mg/day), I have managed to stay in remission…yay!

      If the IVIG/prednisone combo didn’t do the trick, plasmapheresis and/or more powerful drugs was the next treatment in line.

      I hope this helps. Good luck!

    • August 29, 2022 at 7:20 am

      Thank you, Mark, for sharing this.  It does give me hope that I too will be back to feeling myself.  Sorry you have had to deal with these issues.

      I can’t believe how quickly the symptoms surfaced and how much of my life I have had to modify (leave of absence at work (I work with autistic children and it’s all physical) and my hobbies.  Now, the focus needs to be on what I can do and I’m working on that!