Working on Diagnosis Questions

    • January 17, 2017 at 10:25 am

      Hello everyone.

      I’ve been having peripheral nerve symptoms for almost 7 years now — numbness, tingling, pain, off and on issues walking, joint pain, etc. Had been given the dreaded “idiopathic neuropathy” as a diagnosis. Some autonomic issues as well. During a recent NCS/EMB, the neurologist said he believes I have CIDP. It’s weird because he mentioned that he thought my NCS showed “mild” issues but it doesn’t seem too mild to me.

      So, what I’m wondering is if the NCS was mild, does that correlate to symptoms as well?In other words, my symptoms do not seem mild to me. Maybe they should be looking at MS as I do have some issues with optic neuropathy as well.

      I’m just very frustrated because it seems they were dismissive of the issues I’m going through! Any thoughts. Thanks for reading!

    • January 17, 2017 at 1:32 pm

      CIDP can be a difficult affliction to diagnose exactly. Even assessing the results of an NCV is a bit of an art. Usually, all the tests must be made to confirm the presence of CIDP. Neurologists that have specialized in treating CIDP know this and the signs to look for. Have you had the Cerebrospinal fluid (CSF) tested for elevated CSF protein? Other tests can be found in the following publication and may help you and your doctor better understand the disease, its variants, and how to treat it:

      Best of luck!

    • jk
      January 17, 2017 at 4:55 pm

      Not only is CIDP often difficult to diagnose correctly, Dr. Lewis (considered by many to be an expert) lists 23 differential diagnoses in article he just updated May 6, 2016. He also lists some specific Clinical Presentations. Clinical Presentation means what does the Dr. see when you are in front of him.

      Look on this website under support, read what’s there and see if you are able to be seen at a Center of Excellence.

      Also from that article by Dr. Lewis: “Untreated, chronic inflammatory demyelinating polyradiculoneuropathy is characterized by accumulating disability that requires physical and occupational therapy, orthotic devices, and long-term treatment. Close follow-up care with a physician knowledgeable in the field is necessary to adjust treatment.”

      And then there’s this, in an December 22, 2014 article by Jeffrey A. Allen, MD and Richard A. Lewis, MD.

      Disclaimer, Dr. Allen is my neurologist.

      “Conclusions: CIDP misdiagnosis is common. Over-reliance on subjective patient-reported perception of treatment benefit, liberal electrophysiologic interpretation of demyelination, and placing an overstated importance on mild or moderate cytoalbuminologic dissociation are common diagnostic errors. Utilization of clear and objective indicators of treatment efficacy might improve our ability to make informed treatment decisions.”

      the articles are here:

      Note that some patients have a non-typical variant of CIDP, making their condition even more difficult to diagnose. Please do not continue to accept what I call idiots’ diagnosis (idiopathic anything).

    • January 17, 2017 at 7:04 pm

      Thank you for your responses! It’s greatly appreciated and I will read the information at the links you provided.

      I think I was so thrown by the “your NCS looks like you have minor problems” that I couldn’t get beyond that! I know everyone is so different, but to suggest to me that my problem was minor was beyond frustrating. I can only be assured of one thing, and that is, it doesn’t seem minor to me at all!

    • GH
      January 18, 2017 at 1:42 am

      Just to clarify, “idiopathic” means only that the cause is unknown, it does not mean that a specific, correct diagnosis cannot be made. GBS and CIDP are usually idiopathic. My diagnosis was initially GBS, then it was changed to CIDP. I have no idea what caused it, but it was nevertheless successfully treated.