My CIDP Patient Message to CIDP Doctors 2020 Log
CIDP Doctor Diagnosing + CIDP Doctor Progression Assessment + CIDP Doctor Prescribing IgG + CIDP Notes of Interest to Doctors

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 in diagnosing the condition, or attribute every symptom the patient has on CIDP, 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 in the early stages of my consultations had not even heard of CIDP. NOW in 2021 everyone suddenly is an expert!! MY NEWS FOR YOU IS NO YOU ARE NOT UNLESS YOU HAVE SEEN MORE THAN FIFTY CIDP PATIENTS OVER AT LEAST FIVE YEARS! ONLY a truly experienced CIDP Specialist can diagnose and treat CIDP.

 

 

My CIDP Patient Notes of Interest and Messages

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 -

 

Neligan A, Reilly MM, Lunn MP. "CIDP: Mimics and Chameleons". Pract Neural Published Online First: doi:10.1136/ practneurol-2014-000831

 

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" Me = 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". Me = 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 really wonder about the evidence to support this fasciculations statement by the authors? (See note below » 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 to me that my condition is immune-mediated and is the cause of the cramping? Incidentally CIDP fasciculations is NOT twitching for me (and several other CIDP patients): it is more like muscle bubbling or huge worms squiggling under the skin.This is combined with continuous waves and vibration.

 

My CIDP: Oxcarbazepine a Possible "Cure" for Fasciculations and Helpful in Treating (sensory dominant) CIDP Patients

 

» February 12, 2022: After a few weeks of the Oxcarbazepine 600 mg daily dose my "mini-seizures" have greatly dissipated and fasciculations strikingly reduced in my eyes, face and also astonishingly in my legs. In my mind, this raises a important question for CIDP patients and others that suffer from fasciculations- Could Oxcarbazepine be a generalized treatment for fasciculations and also highly valuable for CIDP patients generally - it worked very well for me! I believe that this issue should receive serious consideration and investigation! See: My CIDP Since Going- Solo without CIDP Drugs 2022

 

My CIDP: Eyes and Eyesight Degeneration in CIDP Related to Central Nervous System Involvement

 

» October 08, 2022: My early symptoms 2009 included eyeball fasciculations and other troubling eye issues. These eye symptoms were largely ignored by my doctors at the time. My eye issues persist today and indeed have worsened since being off IgG. The oxcarbazepine notably reduced my eye fasciculations but I my eyesight is lets say "not normal". I am not satisfied at all with the investigation conducted by a specialist Neuro-Ophthalmologist. So again I am investigating myself and in so doing came across this paper which found "our data reveal subtle retinal neurodegeneration in patients with CIDP, providing evidence for visual pathway involvement, detectable by OCT Optical Coherence Tomography". "In patients with CIDP compared with healthy age-matched and sex-matched controls, we found slight but significant volume reductions of the ganglion cell/inner plexiformlayer complex (CIDP 1.86 vs HC 1.95 mm3, p = 0.015), the retinal pigment epithelium (CIDP 0.38 vs HC 0.40 mm3, p = 0.02), and the TMV (CIDP 8.48 vsHC 8.75mm3, p = 0.018). The ganglion cell layer volume and motor nerve conduction velocity were positively associated (B = 0.002, p = 0.02)". The article could finally provide me with the instrument I can use to convince my doctors to start taking my eye symptoms seriously. Please read the article CNS Involvement in Chronic Inflammatory Demyelinating Polyneuropathy Subtle Retinal Changes in Optical Coherence Tomography.

 

Ref: Jens Ingwersen, MD, Jonas Graf, MD, Julia Kluge, Margit Weise, PhD, Michael Dietrich, PhD, John-Ih Lee, MD, Jens Harmel, MD, Hans-Peter Hartung, MD, Tobias Ruck, MD, Sven G. Meuth, MD, PhD, Philipp Albrecht, MD, Orhan Aktas, MD, and Marius Ringelstein, MD Neurol Neuroimmunol Neuroinflamm 2022;9:e1099. doi:10.1212/NXI.0000000000001099eed \

 

CONCEPTS for My CIDP Log Chronic Inflammatory Demyelinating Polyneuropathy, Demyelinating Neuropathies , what are fasciculations

Updated May 2019