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 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. 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“.
To Those who were just diagnosed,
I wen tto a nuerologist for two years with symptoms of pins and needles, numbness sometimes dizzy, but just overall weird sensations in my body, bugs crawling on me. He checked me for MS and then discharged me telling me nothing was wrong. I went back to him again, he was telling me nothing was wrong. These symptoms were getting worse, the shocking electrical pain down my legs, I decided to try another Neurologist. He knew right away what I had ” Peripheral Neuropathy”- then came the testing- he was right on target. Finally, I had a disagnoses for all these weird and lots of times painful symtpoms. It took awhile, now on the right medicine I feel like I did 6 years ago. There are lots of medications out there- be patient you will find the right one.
Sadly, it took 2 years to find the diagnosis- the second neurologist listened to all my symtpoms
Good Luck
Mandy: Thanks for the great comment and encouragement of others. Unfortunately too few neurologist have been trained in the clinical diagnosis and treatment of the neuropathies. Hopefully we are making some progress. If you ever want to help and take POSTERS for the DVD to the doctors office and other things to help change this sad reality, contact us at gene@neuropathysupportnetwork.org and we will send you posters and DVD’s to give out to doctors offices. God bless. Gene.
I have suffered with neuropathy for more years than I want to think about, then not knowing of, later (thanks to the internet) I learned of LS&ESSI (Lightning Strike & Electrical Shock Survivors, Inc.). I found among their members those suffering as I, sharing stories with them I concluded my neuropathy was a by product of electrical shock, multiple strikes of lightning. I have searched since then for someone knowing of this that might help me. No luck so far.
Okey: Please send me an e mail at gene@neuropathysupportnetwork.org so that we can share information and ideas. God bless. Gene
Wife has suffered for 3-5 years getting progressively worse. NIne doctors ran their test in their fields and said she was fine. Went to hospital downtown NorthShore Neurologist Specialist. They took several test and sent blood samples and biopsy samples to Rush and Mayo. 4-6 weeks later she was diagnosed with SFN. Not EM as was mentioned by others prior to these test. As she progressed these years her mental state deteriorated and she had to see a Psychiatrist. Medications abounded and were prescribed with terrible side effects making her feel much worse. It continues today with her mostly in bed – cries all the time the pain in her body and the hot and cold variables threw out the day continue. She’s lost a lot of weight and eats very little. She’s small gal about 102 lbs. and we’ve been married 49 years already.
She looks to me to find her a cure I’ve research this to death. We are well read in the issues pertaining to this condition. Nothing is promising. The meds all have terrible side effects both to the body as well as the mind. She’s withdrawn and doesn’t interact like she once did. Small rides in the car each day – if that but mostly she’s in bed because of the hot and cold chills and arm and leg pains. It’s terrible.
She thinks I don’t care and that we don’t interact much like we used to but in part she’s right I can’t fix her nor talk about her issues that I don’t have any control over. It’s very hard to see her suffer like this.
Testing on her was difficult and painful. I do know she has no cancer but the nerve issues are impacting her nervous system throughout her body effecting her heart as well. She keeps saying she wishes she would die – I told I won’t let her do that will continue to try to find something that can give her relief not death. Any suggestions? I’ve been on several sites have almost 100 downloads on various issues relating to this subject – her mind is sharp but her body is having one hell of a time with these symptoms.
Wayne: Why have they not consider IVIg? It would seem apparent that her SFN is immune mediated and this requires something like IVIg infusions? Or at least this needs to be considered by the doctors. I am going to send you an E mail with the link to the article from a Neurologist who states that SFN is immune mediated treatable with IVIg. Unless there is some reason the doctors know to preclude its use…. why are they not looking at it? Give her a hug for me as the same doctors stared at me for years before trying IVIg.
Col – one last thing my brother and I were also VN vets. Larry died from complications to AO in the Denver VA hospital. It ate him up from the inside. Damaged all his organs and I wouldn’t want anyone to go through what he did. Trying to get his name on the Wall in Washington but with little success at this time.
Grand-Father fought in WW1, Father and many all my Uncles were in WWII and Larry and I along with my Wife’s Brother were also in VN. Since then we’ve lost many over the years to various medical issues some related to AO as well. I go to the VA Clinic in Crown Point, IN.
I thank you for your Service and wish you and your family well.
Wayne: There are no words to express how I feel for you and your family. I wish I was in Indiana where I would somehow honor you and your family but I can no longer walk or travel due to AO yet since my spirit can fly anywhere… it is sending to you and your whole family the message that in all things in this world we must find the anchor that provides meaning for the darkness we experience in this world. For me that is my Lord God who understands the darkness and HE battles with us and for us, to bring light to such darkness until there is a new heaven and earth not made with hands. From one brother to another….