COMING SOON : Doctors kept telling me not to worry for eight years when I knew something was wrong!
If you are a neurologist and are not a CIDP EXPERT - please, please do not try and be the smart person when really the smartest thing to do is to get the patient to a specialist pronto! CIDP is extremely complicated - a minefield - and there is ZERO alternative to referral to a CIDP Specialist! [AND I do mean "specialist" because most neurologist in my experience have not even heard of CIDP). ONLY a CIDP Specialist can diagnose and treat CIDP.
My CIDP Patient Message to CIDP Doctors 2019
My CIDP: Mimics and Chameleons-
I have found an excellent published paper that describes issue matching many of those issues that I have confronted and covered in the pages of my CIDP log. Published in 2014 and titled "CIDP: mimics and chameleons" the full citation being -
The paper is insightful but I note the following comments on three of the core symptoms of my sensory-dominant CIDP. In terms of the definitions of this paper my atypical CIDP is apparently classified as multifocal acquired demyelinating sensory and motor neuropathy (MADSAM) - although weighted heavily towards the sensory.. However, both pain and fasciculations - and even my dreaded cramping - were not significant diagnostic issues for my doctors and are still hardly ever mentioned in my consultations -
» Pain - Author statement: "Prominent pain is unusual in CIDP" - I have had to pro-actively raise the issue of pain with my doctors as they never asked me about it. It definitely was not a diagnostic issue for my doctors! I wonder if there is sufficient evidence to support this pain statement by the authors?
» Fasciculations - Author statement: "Pure motor variants of CIDP may have a ‘motor neurone disease’-like presentation, particularly if the patient reports fasciculation and cramp". Again, my fasciculations was not a diagnostic issue with my doctors until I proactively showed them. In my sensory-dominant CIDP progression, I believe I had invisible (sensory?) fasciculations long before they appeared on my calves and invisible "fasciculations" continue today as a MAJOR troubling symptom. So again I wonder about the evidence to support this fasciculations statement by the authors?
» Cramps - "Same quote as above" - Almost daily MAJOR cramping was one of the earliest symptoms of my CIDP (see my CIDP Timeline). Unlike pain and fasciculations, my cramping was stopped in its tracks within weeks of my very first IgG infusion campaign! This suggests my condition is immune-mediated and is the cause of the cramping?
CONCEPTS for My CIDP Log Chronic Inflammatory Demyelinating Polyneuropathy, Demyelinating Neuropathies ,
Updated May 2019