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.
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.
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 firstname.lastname@example.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. 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“.