CIDP Misdiagnosis

    • gpquinn
      February 9, 2025 at 3:58 pm

      When I first started having problems with my leg, I was sent to a neurologist who diagnosed me with CIDP.  After minimal testing, he prescribed IVIG as a treatment; the symptoms in my legs did get better.  We later switched to SCIG treatments.  Meanwhile I was still having weakness in my hands.

      After some other medical issues, I was (finally!) referred to UCSF.  There, the doctor initially questioned the CIDP diagnosis, and after blood and other tests, determined that, given the totality of my symptoms, that I did not have that (unless I had a very rare type, MADSAM, which she hadn’t ruled out completely yet-  I have more MRIs and a spinal tap coming up.). She indicated that I could stop the SCIG treatments if I wanted (I did).

      So here’s my question:  How do I deal with the original doctor?  I canceled one appointment with him, but have another one scheduled.  How do I tell him that I think he misdiagnosed me, and that I trust my new doctor more?

      Thanks for any advice.

    • Mark Robichek
      February 9, 2025 at 4:05 pm

      Hi, gpquinn.

      I had to go to 4 doctors before I found one who properly diagnosed me with CIDP. I didn’t bother telling any of my previous doctors after I’d switched to new ones. However, I think that most doctors would have a pretty thick skin if you did tell them that you made a switch.

      As for the possible misdiagnosis, I wouldn’t even mention that to your previous doctor until you have received a conclusive diagnosis. At that point, it can become a useful learning experience for that doctor.

      I suspect that when most people change doctors (for whatever reason…misdiagnosis, confidence, personality), they simply leave without telling the previous doctor the reason(s).

      Good luck with your new doctor. Hopefully, he can figure out what’s going on with you. Then you’ll finally be on the road to what will hopefully be a full recovery!

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