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.”
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.