Symptoms of Neuropathy

Symptoms of Neuropathy

In 2015, the good news is that medicine has made great progress in the last decade in understanding Peripheral Neuropathy, acknowledging the symptoms, diagnostic skills, increased tests for diagnosis and some treatments which have proven successful for both the illness, neuropathic pain and loss of muscle control.   Yet we still have a long way to go in this struggle to help neuropathy patients and the medical professionals who work with them.

In the recent past, this has not been so as in 2001, when I went for my first VA supplied doctor he looked at my symptoms and then stated “I can find no reason for the veterans symptoms”. Okay, he was retired and had no updated training in neurology since the 1960’s.

In the same year an expert Neurologist at a large University in Southern Florida, ignoring the extensive three decades long medical history of known symptoms of neuropathy; armed with a diagnosis and a referral by my treating physician who diagnosed neuropathy based on these symptoms; and armed with an abnormal EMG/Nerve Conduct Test conducted in the same office; without comment to the patient, writes in the patients’ medical record “patient is claiming to have something he does not have” and this man was teaching Neurology at the University!

Within three years from 2001 I was totally disabled because of the lack of diagnosis and treatment a prediction of the result of failed diagnosis and treatment noted by Dr. Norman Latov MD PhD years later.

In 2004 IVIg or immune globulin treatment (See Why IVIG) was begun for my long standing symptoms since 1968 of Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) with Autonomic Neuropathy with a total positive response to the IVIg.

Yet the battle with Medicare had just begun, as Medicare stated IVIg was “medically unnecessary”!  Not long afterwards, one brands of IVIg was approved by the FDA for CIDP and later another brand for Multifocal Motor Neuropathy (MMN).

The good news is that we have come a long way since 2001 and for the last two decades much progress has been made in the understanding of Peripheral Neuropathy and its effect on patients.

While there have been some improvement in the understanding of neuropathy, yet much remains to be done in providing doctors with the tools necessary for diagnosis and better treatment options.  (See Journal of the Peripheral Nervous System, Volume 17, Supplement 2, May 2012, “Proceedings of The Neuropathy Association’s Neuropathy Summit-Physicians Conference”).  (NOTE: There is a charge for viewing the article. )

These problems were highlighted in 2012 by the Veterans Affairs Administration. The VA published a recent notice on Peripheral Neuropathy noting that PN from Agent Orange exposure, does not necessarily resolve as claimed by the VA for decades.  As early as 2004, the Veterans and Agent Orange Committee (VAO) recognized the potential latent nature of some of the conditions linked to Agent Orange exposure when it said that “many diseases do not appear immediately after exposure”.  In doing so, the  committee confirmed that the latent nature of the disease may prevent the symptoms of peripheral neuropathy from appearing until long after one year from exposure.  Today the situation is made worse by the current VA claim that PN is just a disease accompanied by numbness, tingling and motor weakness and worse assumes medicine could diagnose the symptoms back in the 1960′s and 1970′s at 10% disabling!

It is a challenge for Medicine to diagnose PN in 2015 let alone decades earlier. This rather elementary VA description of the symptoms highlights the problem of poor attitudes about PN that has haunt the medical system for years, leading to frustrated patients attempting to find a diagnosis, help and support for this illness.

As some medical experts have noted, patients need more than what is NOT wrong.  (See:  Neurology NOW, March 15, 2012 “How to Diagnose Peripheral Neuropathy? No simple Answers” by Mark Moran).  Yet even in this article they missed the diagnostic value of the spinal tap for immune mediated neuropathies.

After my effective treatment with IVIg began, no fewer than five neurologists asked me ‘Why did they not do a spinal tap?  They will have to tell me!  But even here as Dr. Norman Latov MD PhD notes in his book for patients, Peripheral Neuropathy: When the Numbness, Weakness, and Pain Won’t Stop, the spinal tap is NOT full proof and sometimes the protein is NOT elevated but you still have the immune mediated neuropathy.

Here is what the National Institute of Neurological Disorders states about the symptoms of Peripheral Neuropathy, which takes you a little beyond the three word description from the VA:

“What are the symptoms of peripheral nerve damage?

“Symptoms are related to the type of affected nerve and may be seen over a period of days, weeks, or years. Muscle weakness is the most common symptom of motor nerve damage. Other symptoms may include painful cramps and fasciculation’s (uncontrolled muscle twitching visible under the skin), muscle loss, bone degeneration, and changes in the skin, hair, and nails. These more general degenerative changes also can result from sensory or autonomic nerve fiber loss.

“Sensory nerve damage causes a more complex range of symptoms because sensory nerves have a wider, more highly specialized range of functions. Larger sensory fibers enclosed in myelin (a fatty protein that coats and insulates many nerves) register vibration, light touch, and position sense. Damage to large sensory fibers lessens the ability to feel vibrations and touch, resulting in a general sense of numbness, especially in the hands and feet. People may feel as if they are wearing gloves and stockings even when they are not. Many patients cannot recognize by touch alone the shapes of small objects or distinguish between different shapes. This damage to sensory fibers may contribute to the loss of reflexes (as can motor nerve damage). Loss of position sense often makes people unable to coordinate complex movements like walking or fastening buttons, or to maintain their balance when their eyes are shut. Neuropathic pain is difficult to control and can seriously affect emotional well-being and overall quality of life. Neuropathic pain is often worse at night, seriously disrupting sleep and adding to the emotional burden of sensory nerve damage.

“Smaller sensory fibers without myelin sheaths transmit pain and temperature sensations. Damage to these fibers can interfere with the ability to feel pain or changes in temperature. People may fail to sense that they have been injured from a cut or that a wound is becoming infected. Others may not detect pains that warn of impending heart attack or other acute conditions. (Loss of pain sensation is a particularly serious problem for people with diabetes, contributing to the high rate of lower limb amputations among this population.) Pain receptors in the skin can also become over sensitized, so that people may feel severe pain (neuropathic) from stimuli that are normally painless (for example, some may experience pain from bed sheets draped lightly over the body).

“Symptoms of autonomic nerve damage are diverse and depend upon which organs or glands are affected. Autonomic nerve dysfunction can become life threatening and may require emergency medical care in cases when breathing becomes impaired or when the heart begins beating irregularly. Common symptoms of autonomic nerve damage include an inability to sweat normally, which may lead to heat intolerance; a loss of bladder control, which may cause infection or incontinence; and an inability to control muscles that expand or contract blood vessels to maintain safe blood pressure levels. A loss of control over blood pressure can cause dizziness, lightheadedness, or even fainting when a person moves suddenly from a seated to a standing position (a condition known as postural or orthostatic hypotension).

“Gastrointestinal symptoms frequently accompany autonomic neuropathy. Nerves controlling intestinal muscle contractions often malfunction, leading to diarrhea, constipation, or incontinence. Many people also have problems eating or swallowing if certain autonomic nerves are affected.”

(See: Peripheral Neuropathy Fact Sheet)

Thus for patients with Peripheral Neuropathy, here from a patients perspective during 43 years’ of failed diagnosis and treatment are the known remitting and relapsing symptoms of a progressive Peripheral Neuropathy:

I had digestive problems of bloating, alternating diarrhea and constipation; had overflow urinary incontinence.   Breathing was difficult as chest muscles felt tight, severe painful muscle cramps in the chest and back by the shoulder blades (often accompanied by sensations of electrical current coming from the shoulder blades) driving me to my knees (years later testing noted restrictive pulmonary disease);  unexplained tachycardia (what I now know as non-cardiac tachycardia) with doctors telling me I was having a heart attack, only to be told I was not having a heart attack; I could not sleep for the pain; walking was difficult due to the numbness/pain/weakness or my legs constantly felt like heavy cement; felt exhausted during the day and this chronic fatigue prevented the complete fulfillment of my military duties and the PT test requirements; was unable to hold things in my hands, with difficulty turning pages or write with a pen; impotence; sometimes if clothing or bed sheets touched me it felt very painful so I built a frame over me at night to keep the bed sheets from touching me; had painful muscle cramps in the legs; could not tolerate hot weather and broke out in severe upper body night sweats; had electric shocks, pins, needles, tingling sensations, which caused significant neuropathic pain yet there was no observable reason for these symptoms; body felt numb and painful at the same time; the more I tried to walk, the more my body became numb from the waist down; vision problems even with glasses; had balance problems; severe bone pain in the feet; feelings as if screw drivers were being driven out from inside my fingers; problems walking without help at times or knowing where my feet were located; because of the lack of sleep, mental sharpness suffered making performance of my duties difficult which is an understatement of gross proportions.

(SOURCES which support the above symptoms as related to Peripheral Neuropathy are in the writings of Norman Latov MD, PhD, Director of the Neuropathy Center at Cornell University, and from Louis Weimer, M.D. Clinical Autonomic Laboratory, Columbia-Presbyterian Medical Center, New York City, and from Roy Freeman, MD, Department of Neurology, Harvard Medical School and a Textbook of Peripheral Neuropathy, Peter D Donofrio, MD, Editor, Professor of Neuropathy, Chief of Neuromuscular Section, Vanderbilt University Medical Center, Nashville, TN Published by DEMOS Medical, 2012. )

Granted many of the symptoms listed above may be symptoms of diseases other than Peripheral Neuropathy. So you need a qualified Neuromuscular Neurologist to determine a diagnosis. But if the physician is dismissive of your medical history, understand that in diagnosing a Peripheral Neuropathy, your medical history and symptoms are critical for the doctor to know and understand at face value if they are to provide you with a diagnosis and possible treatment.

About the Author

LtCol Eugene B Richardson, USA (Retired) BA, MDiv, EdM, MS

Col Richardson has suffered with severe neuropathy for over 45 years. A 27 year military veteran and veteran of the Vietnam War, he was diagnosed with a progressive chronic peripheral neuropathy resulting in severe disability. This diagnosis has been confirmed as due to exposure to Agent Orange. It was not until 2010, 42 years after his exposure to Agent Orange, that his diagnosis was recognized by Veterans Affairs as service connected.

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10 Comments

    1. Milo: Yes, neuropathy can and often does affect our ability to drive. When we loose position sense or sensations in our feet, it is difficult to know where they are and thus confusion can result. Many patients have added hand controls to help with this problem, since the hands are usually affected less than the feet. Neuropathy also can cause extreme exhaustion, mental and physical, and patients need to be aware of how alert they are and have someone else drive when this occurs. There are forms of neuropathy that can cause one to fall asleep at a red light indicating the need for rest. Most patients upon resting recover from these remitting and relapsing symptoms. Optic neuropathy, although rare and some indications are that it is a genetic condition can affect the eyes sight even with glasses. Being aware of our abilities and limits is a very important part of patient acceptance of their limitations and adjust accordingly. See RESOURCE TAB and the books by Norman Latov MD and Mims Cushing (patient ideas for coping).

  1. Thank you so much for an informative post and a good story about a struggle with neuropathy. Thanks for all the good work. Unbelivable that one person can do so much good for so many people with this terrible cronic disease.
    I will be looking for some input regarding recomended diet for a person with terrible small fiber sensory neuropathy and autonomic neuropathy with gastrophoresis and chest pain

    1. Harold: If you go to the NSN TODAY tab on the website you will find an article on AUTONOMIC NEUROPATHY and some of the recommendations on diet are there… and these come from Dr. Latov’s book… i.e. low carb diet, small meals, with salads, are some of his thoughts… read it and then let me know of unanswered questions.

  2. Terry: The link in the article Symptoms of Neuropathy to the NIH website is the best source of all known symptoms of neuropathy. by what you write, it sounds like you had a form of GBS that has not resolved and unfortunately you should have been given IVIg early on. However, since your neuropathy has continued it now is more likely than not a form of CIDP. Get Dr. Norman Latov’s book listed in the RESOURCE tab as it will help you understand all neuropathies and what sometimes can be done. Look also at the articles on neuropathic pain in the NSN TODAY TAB as this will show you also what can be done. You need to be working with a neuromuscular neurologist to get help. I DO NOT RECOMMEND USING the OPIADS as they eventually become more of a problem than the disease. You may want to work with your doctor to get off of them as soon as possible. This website costs us around $25,000 a year now to operate along with the offer of our free DVD’s that has been endorsed by a number of neurologists and psychiatrists. We depend on donations to keep it going. God bless. Gene

  3. I have had diabetes for 41 years, and I am fearful that I may be suffering from either peripheral neuropathy or autonomic neuropathy, or both. I have had some problems with my feet feeling uncomfortable, and my toenails and fingernails always look terrible. I can’t stand to have blankets over my feet at night. But, the worst thing for me has been that I have had uncontrollable diarrhea. I sometimes have it so badly that I can’t make it to the bathroom. It is so bad that I have stopped eating anything when I have to be somewhere, including work. This means that I don’t eat ANYTHING all day, until I come home – no breakfast or lunch. I am on an insulin pump, so thankfully my diabetes stays stable, but it is very difficult to try to work without eating anything. I started having trouble after my last son was born, with becoming dizzy when I stood up. One of my old endocrinologists determined that my blood pressure was high when laying down, but low when upright. I believe that it still is, but I have learned to live with it. None of my doctors have ever really diagnosed me with any kind of neuropathy – peripheral or autonomic, but I believe that I have one or both. What should I do? It sounds like autonomic neuropathy can be dangerous, and I am becoming more and more afraid that this is what I am dealing with. I was diagnosed at one point with microscopic colitis, but nothing the docs have given me has helped with the symptoms, which makes me wonder so much more about the neuropathy. Help! Advice?

    1. Jane: While only a neuromuscular neurologist can diagnose your condition, your description fits the very highly probable diagnosis of autonomic neuropathy / peripheral neuropathy due to your diabetes or other cause. You could have diabetic neuropathy but also have something like CIDP in addition since your diabetes is under control. In either case, since it is involving your autonomic nervous system, it is immune mediated, thus the use of IVIG would be appropriate as it does help many patients the autonomic neuropathy component. See the article on IVIg in the NSN TODAY tab… A trial is well justified in your case. I will send you an article on a trial of IVIG in an e mail, and even thought it notes a diagnosis of CIDP, it is highly possible that is what you have on top of the diabetes. You need to have a complete workup by a Board Certified Neuromuscular Neurologist (one who also treats MS) with an EMG, Nerve Conduct Test, a spinal tap, blood work, and perhaps a skin biopsy to see if your neuropathy is motor, sensory, small or large fiber, axonal or demyelinating or all of the above. There is also an Evoked Potential Test to determine autonomic neuropathy. The skin biopsy also can help here with the evaluation of the sweat glands in the lower body. This correlates highly with autonomic neuropathy. As for what to do in helping control symptoms see the link in the article on Autonomic Neuropathy as it will take you to an article by Dr. Latov in one of the newsletters showing some of the things you can try to help control the diarrhea. The trick is not to OVER TREAT the symptoms, but the items mentioned in this article do work especially regarding foods to eat or avoid. By your description of the blood pressure, this is known as hypostatic blood pressure when your pressure drops on standing up and it is very important that when you get up from sleeping that you sit on the edge of the bed to allow the blood pressure to stabilize. I will send an e mail. Gene

  4. I was a corpsman in Viet Nam 11/68-11/69. Walked through, bathed in B52 bomb craters, and drank water from sources that were contaminated from Agent Orange. Was in the Da Nang area I corps for the entire period. Wounded 3/69 in Right Upper Arm and receive 10% compensation for the wound plus 30% disability for PTSD. Within one year after returning from Viet Nam had tremors, tingling and numbness in my right arm which extended to my hands. Prior to leaving the service talked to a Naval Doctor and asked if I should have the shrapnel in my arm removed. He recommended not to because he felt it would be more detrimental. Since I worked with doctors as a corpsman none of this information is in my medical records. In 2002 I had a Agent Orange exam completed, at which time an EMG was done. The result showed I had four extremity peripheral neuropathy. I always thought that the shrapnel was the problem. Initially, in June 1970 only the right arm was affected. The reason I went to the VA in 2002 was the increased problems I was having in all of my extremities. Tremors in both arms, loss of balance in my lower legs with muscle loss and tingling and numbness in both feet. Have been seeing the VA since 2002 and am being treated for PN and am now using prosthetics to walk. It was in 2002 that I put a claim in for PN but it was denied because I could not prove that I had the disease within one year of leaving the service. Also, that PN was transient and should resolve itself within 2 years.
    Thanks, Jim

    1. Jim: Send me an email to gene@neuropathysupportnetwork.org and I can give you all the information you need to win with the VA! You have a chronic peripheral neuropathy due to exposure to Agent Orange in Vietnam and the new VA law does NOT claim that it will resolve in 2 years… the Institute of Medicine proved this was WRONG back in 2010. As for the early onset requirement by the new VA law this is bogus, as medicine COULD NOT DIAGNOSE OR EVEN RECOGNIZE THE SYMPTOMS OF PN BACK THEN let alone in 2014! I have all the information and proof you need to win against this bogus requirement by the VA law. Send your information to me via my e mail address above and help will be on the way. God bless. Col Gene

  5. My nuropathy is in my bum thighs and legs prickling burning had back injections as I fell three times before this started normal emg and thermal threshold normal skin biopsy what now ?

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