Does An 'Idiopathic Neuropathy' Diagnosis Mean Anything?

Today's post from neuropathyjournal.org (see link below) is written by well-known neuropathy activist, LtCol Eugene B Richardson and in this article he looks at the frustration of receiving a diagnosis of 'idiopathic' neuropathy, when the cause can't be found. In an interesting article, he quite rightly points out the inherent nonsense of receiving a diagnosis, which is not really a diagnosis. The only redeeming feature of idiopathic neuropathy is the acceptance that you actually have neuropathy. That is a basis from which to progress but it is so frustrating for patients who are far too often sent home with that diagnosis and very little else. As this blog continually tries to point out, understanding what's wrong with you is half the battle to learning to live with it and its 'second hand' medications. Worth a read.

Is the Diagnosis of Idiopathic Neuropathy a Cop-Out? 
By LtCol Eugene B Richardson, USA (Retired) BA, MDiv, EdM, MS

The majority of Neuropathy research today is focused on diabetes and obesity which is fine, but too many patients are not diabetic or obese yet carry a diagnosis of neuropathy. In the Fall 2011 issue of the Foundation for Peripheral Neuropathy Newsletter A. Gordon Smith, MD, University of Utah states we are whittling away at the unknown: the fight against idiopathic neuropathy.

The second most common cause of peripheral neuropathy is “idiopathic” (unknown cause). A cause which is not a cause is an oxymoron if ever I saw one.

The statement that this diagnosis is often confusing to patients is the understatement of the year. While the diagnosis is intended to help physicians and researchers classify the disorder, examine the causes as they do with the ‘acceptable’ diseases such as MS or Cancer, it seems to reflect an effort to convey an understanding that doesn’t really exist.

From my own view, it is a diagnosis that belongs in the research labs and not in the clinical setting of helping a patient. This diagnose all too often reflects the failure of medical practitioners who do not have the clinical training to diagnose neuropathy using the tools they do have in 2014.

Examples of just a few diagnoses (**) that would be more accurate, without including the word “idiopathic” which adds nothing but uncertainty, appear below. You can add acute (two months) or chronic (beyond two months) or progressive (remits and relapses with increasingly worse symptoms) to any of these focused findings. While not exhaustive this list will provide you with the point being made. 

Peripheral Neuropathy or polyneuropathy
Axonal Neuropathy or Polyneuropathy
Sensory Neuropathy or Polyneuropathy
Motor Neuropathy or Multifocal Motor Neuropathy
Sensory/Motor Neuropathy or Polyneuropathy
Immune Mediated Neuropathy or Polyneuropathy
Large Fiber Neuropathy or Polyneuropathy
Small Fiber Neuropathy or Polyneuropathy
Autonomic Neuropathy
Autoimmune Sensory Neuronitis
Entrapment Neuropathy (Carpel Tunnel Syndrome – common in diabetic and immune mediated neuropathies)
Gillian Barré Syndrome
Distal Symmetric Polyneuropathy
Chronic Inflammatory Demyelinating Polyneuropathy and variants
Or when there is a possible suspected cause of the neuropathy:
Diabetic Neuropathy
Celiac Neuropathy
Chemotherapy/Radiation induced neuropathy
Nutritional deficiency induced Neuropathy
Alcohol induced Neuropathy
Hereditary or Genetic Neuropathy
Toxic Neuropathy
Drug induced Neuropathy
Entrapment Neuropathy
Neuropathy with IgM Monoclonal Gammapathy
Vasculitic Neuropathy
AIDS induced Neuropathy
Lyme Disease induced Neuropathy
Diphtheric neuropathy
Sarcoid neuropathy
Cancer induced Neuropathy
Paraneoplastic neuropathy
Neuropathy in myeloma or POEMS
Neuropathy in amyloidosis
Neuropathy in Agent Orange exposure***

(* **Supported by the findings of the Institute of Medicine in 2010 and confirmed by the Veterans Affairs Administration law in 2012 as presumptive to Agent Orange exposure. For Guidance for Veterans for submitting a claim to the VA. Or you may send an E Mail to gene@neuropathysupportnetwork.org for more guidance.)

(**Source of Diagnostic Descriptions: Norman Latov, MD PhD (from Amazon.com) Peripheral Neuropathy: When the Numbness, Weakness, and Pain Won’t Stop 2009 American Academy of Neurology Press Quality of Life Guide)

As this article notes, until recently, there appeared to be little hope for patients with idiopathic neuropathy to achieve a better understanding of their disease, or for researchers to discover an effective treatment or cure. The article notes that this may be changing, but the focus has to go beyond the issue of diabetes and obesity and focus on increased clinical training and what we DO know today.

Just recently I was reading about MS and everyone will recognize this disease, Multiple Sclerosis. The article noted what is true, medicine still does not know for sure what causes MS. Yet have you ever seen a diagnosis of Idiopathic MS? No and you won’t see one. Why? MS is an accepted disease and PN is still fighting for recognition and patients too often still go without help with no meaningful diagnosis, type or hint of a cause even with the tests we now have in 2015. It is time we keep the diagnosis of “Idiopathic Neuropathy” in the research lab where it belongs and improve the training of the doctors at the clinical level regarding the potential seriousness of Peripheral Neuropathy. If this would have happened for many neuropathy patients including myself, I would not have gone for 44 years without a diagnosis and treatment to prevent my disability and loss of two great careers! Read “One Man’s Journey“.

http://neuropathyjournal.org/is-the-diagnosis-of-idiopathic-neuropathy-a-cop-out/