DISCLAIMER: All medical information should be considered only educational in nature and is not intended to replace medical advice from, or your treatment by, a qualified medical doctor.

Frequently Asked Questions About Neuropathy

General

  • What is Peripheral Neuropathy?

    Peripheral neuropathy is not a single disease. It is a general term for a series of disorders that result from damage to the body’s peripheral nervous system. The peripheral nervous system sends messages from the brain and spinal cord (central nervous system) to the rest of the body: the arms and hands, legs and feet, internal organs, joints and even the mouth, eyes, ears, nose, and skin. Peripheral nerves also relay information back to the spinal cord and brain from the skin, joints, and other organs. The symptoms of peripheral neuropathy occur when peripheral nerves are damaged or destroyed. Peripheral neuropathy’s course is variable; it can come and go, slowly progressing over many years, or it can become severe and debilitating. However, if diagnosed early, peripheral neuropathy can often be controlled. This is why we need increased research to find better treatments.

    Helpful Articles


    Small-Fiber-Neuropathy Small Fiber Neuropathy So many neuropathy patients have heard these words from very qualified neurologists and health professionals. “Your EMG and Nerve Conduct Studies are normal. You do not have neuropathy”… not so quick. Dr. Norman Latov of Cornell University states that the EMG and Nerve Conduct Studies only measure damage to…READ MORE

    Neuropathy-Journal-thumb-3Diabetic Neuropathy According to the experts, diabetic neuropathy is the most common cause of about 50% of all neuropathies. Dr. Todd Levine recently participated in a Facebook chat on the subject of “Understanding Pre-Diabetes, Diabetes, and Diabetic Neuropathy”. Some doctors deny the existence of neuropathy from ‘pre-diabetes’ but see the following two references: 1. Norman Latov, MD…READ MORE

    Neuropathy-Journal-thumb-2Celiac Disease and Neuropathy Dr. Howard Sander’s published an article on “The Link Between Celiac Disease and Neuropathy” and was featured on The Neuropathy Associations website before they closed on Dec 31, 2014 and brings attention to the need for some patients presenting with neuropathy and the symptoms of Celiac Disease to be tested. Howard. W. Sander, M.D. is a…READ MORE

    Neuropathy-Journal-thumb-5Medication Induced Neuropathy Peter D. Donofrio, M.D. is professor of Neurology and director of the Neuromuscular Division of the Department of Neurology at Vanderbilt University Medical Center. He is director of Neuropathy Center at Vanderbilt. To read his excellent article on Medication Induced Neuropathy and insights on the LIMITS of the blood-brain barrier a concept which was often misused by…READ MORE

  • Why have we heard so little about Peripheral Neuropathy? Is it a new disease?

    Peripheral neuropathy is common. It is estimated that upwards of 20 million Americans suffer from this illness. It can occur at any age as children and young adults are affected. The disease is more common among adults 40 and up.

    Peripheral neuropathy has always been present, but has not received much attention. Its extent and importance have not yet been adequately recognized. It is apt to be misdiagnosed, or thought to be merely a side effect of another disease like diabetes, cancer or kidney failure. The development of new therapies has unfortunately been slow and underfunded. Increased research is critical to understand Peripheral Neuropathy.

  • Why do many doctors fail to diagnose or treat neuropathy?

    First and foremost, the primary contact for the diagnosis and treatment of peripheral neuropathy is a Neuromuscular Neurologist.

    However, the best approach is a multidiscipline approach with active involvement of all medical disciplines. This may include the doctor of internal medicine, the pain management physician, the podiatrist, the physical therapist, specialists in EMG and Nerve Conduct Testing, geneticists, radiologists, oncologists, hematologists, cognitive psychologists, cardiologists, pulmonologists, orthopedists, immunologists, surgeons, gastroenterologists, urologists and other medical professionals.

    Ask yourself, what part of the body does not have peripheral nerves? The answer is the brain and the central nervous system. Look at the figure in the TAB for ABOUT NEUROPATHY and look at the drawing of the person on the right. Do you see the peripheral nervous system? It is everywhere outside the brain and central nervous system! Too often all we see in the ads are the feet! Do you know I have had doctors tell me that neuropathy does not affect the upper body, hands or face and it is only caused by diabetes, aids and alcoholism? Do you see the possible scope of the disease? If we develop better tools for the doctors and better treatment options through increased research, this would assist doctors treating patients instead of having frustrated patients and doctors?

    Yet, patients must realize the limitations of the doctor, understanding that they will often find practical answers to some of the symptoms or problems they experience from patients who have walked the walk. But here is where you must read patient books from doctors (Dr. Latov’s book) so that you are able to sort through the patient suggestions and have your own treating doctor who you can consult on these patient ideas, just to be sure.

    Russell L. Chin, M.D., Assistant Professor of Clinical Neurology and a Member of The Neuropathy Association has this to say in an article from The Neuropathy Association. “Given that so much of medical residency training is based on treating patients in the hospital, many of us emerge from our residencies not only sleep-deprived but more ignorant about “outpatient” neurology than we’d care to admit. As a result, my knowledge about the world of peripheral neuropathy (a condition seen mostly in the “outpatient” setting) came later–during my fellowship year after residency. As fate would have it, half of that year was spent at the Peripheral Neuropathy Center of Weill Cornell Medical College, which had just opened under the direction of Dr. Norman Latov. Under Dr. Latov’s mentorship, as well as that of Dr. Thomas Brannagan and Dr. Howard Sander, I learned about the many facets of neuropathy and was drawn to a career in this field. I sometimes wonder what professional path I would be on if I had graduated a year earlier.

    I work with neuropathy patients on a daily basis and have become intimately familiar with the challenges they face. I often wish there was more I could do for those who continue to suffer. This is what drives my commitment to working with this community and our quest for more treatment options and cures. Sir Francis Bacon’s phrase, ‘Knowledge is power,’ are words many of us realize—whether we are a patient, friend, family member or health care provider—as we seek credible information and resources to help address this frustrating, and often mysterious disease.”

    If it were not for an informed caring patient, I would have stopped breathing and died years ago, when the infusion doctor did not understand dosing, product differences and infusion speeds. Conversely, if it were not for a research article from Dr. Latov’s work on IVIg, which I gave to the doctor who listened, I would have continued into a life threatening condition while doctors stared at me for not being a diabetic.

    When doctors brushed aside my complaints that were clearly autonomic neuropathy, it was my knowledge from my patients that helped me treat and not over treat the symptoms as later confirmed in statements in Dr. Latov’s book. PATIENT DOCTOR PARTNERSHIP!

    Conversely, when a very knowledgeable neurologist’s sarcastically brushed aside my diagnoses in 2000 when he discovered that with compression I had strong reflexes, it was my knowledge from other doctors who taught me that sometimes reflexes are absent or diminished, but not always.

    A good doctor patient partnership and support from other patients are the solutions to the all too often failure to diagnose and treat, until research provides more answers and tools for diagnosis for neuropathy.

  • Is neuropathy psychosomatic or a mental illness?

    No.

    There is no one test that will reveal all Peripheral Neuropathies. With the emphasis on the objective for legal purposes in medicine, this can pose a serious problem for the neuropathy patient and the doctor. The symptoms may not be revealed in objective testing until damage is done to the nerves.

    The nerve conduct tests, the EMG, the skin biopsy, spinal tap, blood work and other tests may give a trained neurologist clues to what may be occurring with your peripheral nervous system. A great Neurologist Dr. Menkes stated some years ago, “The neuropathy patient’s subjective complaints must be taken at face value, as this often is the only clue to the neuropathy early in the course of its development. Mutual respect between patient and doctor is demanded when caring for the neuropathy patient.” Unfortunately, such respect faces a medical system that demands objective evidence for testing, payment of insurance and proof of disability.

    In the course of getting help with your neuropathy and dealing with a nightmare of symptoms, loss of purpose, loss of job, loss of meaning, changing relationships with family and friends, you may find yourself desperately in the need of help. Please do not even hesitate to ask for help from a trained Psychologist. They will help you find your way through the maze of emotions that you and/or your family are experiencing.

    For those who may at times think life is not worth living with neuropathy, I am reminded of what Dr. Berman in his book (see resources tab) states, “Suicide is a permanent solution to a temporary problem!” The temporary problem is often the loss of purpose, loss or change in relationships and loss of meaning for the neuropathy patient. If you discovered purpose, meaningful relationships and meaning in your life once, however difficult it may seem, you can rediscover them again. Do not hesitate to ask for help, it is there for you.

  • What areas of the body are affected by peripheral neuropathy?

    The answer is ALL except for the brain and central nervous system.

    Ask yourself, what part of the body does not have peripheral nerves and we could list the brain and the central nervous system. Look at the figure in the TAB for ABOUT NEUROPATHY and look at the drawing of the person on the right. Do you see the peripheral nervous system? It is everywhere outside the brain and central nervous system including your heart, digestive system, urinary system, vascular system, system controlling heat, sweating, tears and more.

    Helpful Articles


    Small-Fiber-Neuropathy Small Fiber Neuropathy So many neuropathy patients have heard these words from very qualified neurologists and health professionals. “Your EMG and Nerve Conduct Studies are normal. You do not have neuropathy”… not so quick. Dr. Norman Latov of Cornell University states that the EMG and Nerve Conduct Studies only measure damage to…READ MORE

    Neuropathy-Journal-thumb-3Diabetic Neuropathy According to the experts, diabetic neuropathy is the most common cause of about 50% of all neuropathies. Dr. Todd Levine recently participated in a Facebook chat on the subject of “Understanding Pre-Diabetes, Diabetes, and Diabetic Neuropathy”. Some doctors deny the existence of neuropathy from ‘pre-diabetes’ but see the following two references: 1. Norman Latov, MD…READ MORE

    Neuropathy-Journal-thumb-2Celiac Disease and Neuropathy Dr. Howard Sander’s published an article on “The Link Between Celiac Disease and Neuropathy” and was featured on The Neuropathy Associations website before they closed on Dec 31, 2014 and brings attention to the need for some patients presenting with neuropathy and the symptoms of Celiac Disease to be tested. Howard. W. Sander, M.D. is a…READ MORE

    Neuropathy-Journal-thumb-5Medication Induced Neuropathy Peter D. Donofrio, M.D. is professor of Neurology and director of the Neuromuscular Division of the Department of Neurology at Vanderbilt University Medical Center. He is director of Neuropathy Center at Vanderbilt. To read his excellent article on Medication Induced Neuropathy and insights on the LIMITS of the blood-brain barrier a concept which was often misused by…READ MORE

  • Why does neuropathy affect the feet first in many neuropathies?

    Neurologists call this the length dependent affect.

    If you think of a large electric transformer located in Boston with lines stretching all the way to California, it takes more energy for the current to reach California from Boston because of the length of wire it must travel. If there is a problem with the signal strength it is more likely to affect the receivers in California than in the Midwest or Boston area closer to the transmitted signal.

    Since the feet are located at the far end of the nerves of the human body (California), the longest distance from the brain (Boston), it takes more push to get the signal to the feet and the signal from the feet to the brain. So if there is damage along the lines of the peripheral nervous system, it means that the feet will be affected before other parts of the body.

    However, in some atypical neuropathies other parts of the body may be affected first because of the causes and location of the damage to the peripheral nerves in the upper body, so this principle is not absolute.

  • How does peripheral neuropathy differ from MS (Multiple Sclerosis)?

    The symptoms are often similar involving difficulty in moving limbs, loss of position sense, strange sensations, and temporary paralysis of a limb and so forth. I remember the nurse who told me she one morning could not move her feet while driving and soon after was diagnosed with MS! I told her of the time I stood up and then could not move my feet and soon after was diagnosed with neuropathy. We call this temporary paralysis and it happens both in MS and in neuropathy.

    It is important for neuropathy patients to be tested for MS to rule this out because of many of the similarities of symptoms.

    The basic difference is that in MS, the disease damage is found in the brain resulting in the failure of the brain to transmit correct signals to the peripheral nerves, whereas with Peripheral Neuropathy the damage is to the peripheral nerves at the ends of the electrical system of the human body and the problem is in transmitting correct signals back to the brain.

  • Can neuropathy be prevented in cancer patients receiving chemotherapy and radiation?

    Dr. Latov reports that some chemotherapy treatments cause neuropathy and others don’t. Some chemotherapy products while causing neuropathy, yet after treatment is completed, the neuropathy symptoms remit over time. In other products the neuropathy does not remit. Dr. Latov recommends that patients facing chemotherapy be tested to ensure that they do not have other causes for any potential neuropathy.

    Research is needed for these patients!

    It has been reported by some patients that increases in vitamin B1 have reduced neuropathic pain levels in chemotherapy or cancer patients in general, so consulting with a good nutritionist and your oncologist in this regard may be worth exploring. Research needed.

  • Currently is there anything that will cure any or all of the neuropathies?

    Some types of peripheral neuropathy can be cured, yet most cannot. However, many patients can be helped. Therapy is directed at treating the underlying disease and at improving the symptoms with the right medications. An experienced neuromuscular neurologist can help patients feel more comfortable, and their quality of life can be greatly improved. But it is extremely important to get to an experienced neurologist as soon as you notice the symptoms before the disease has a chance to cause severe permanent damage. The fact is, we desperately need more research!

    Below is a list of some neuropathies that can be cured or have the symptoms improved:

    Carpel Tunnel is an entrapment neuropathy (see Dr. Latov) and is often very successfully treated with surgery!

    Vasculitic neuropathies are treatable and must be treated according to Dr. Latov.

    Neuropathies caused by poor diet can often be reversed by a nutritionist recommended diet.

    Neuropathies caused by some toxins can be reversed by removing the patient from the toxin.

    Neuropathies caused by vitamin deficiencies such as low vitamin B-12 can be reversed by increasing the levels of B-12 or the appropriate vitamin.

    Neuropathies caused by too much or not enough vitamin B-6 can be reversed by the appropriate action.

    Read Dr. Latov’s book for you will see a great discussion of these facts.

    Are there answers for neuropathies such as hereditary neuropathies, some diabetic neuropathies that continue even with glucose level control, chemotherapy or radiation or cancer induced, or the mysteries in celiac’s neuropathy, autoimmune neuropathies, neuropathies from Lyme disease, neuropathies from Amyloidosis, idiopathic neuropathies and so many more? No. Do we need more research? Do we need more tools for diagnosis and treatment?

    Let me end this with Mims Cushing’s definition of idiopathic which technically means of “unknown cause.” She said that it sounds to her more like “idiot” and pathetic” and to me this means, we must have more research to eliminate this term!

  • Where can I go to obtain reliable help for, and an understanding of, my neuropathy?

    If you find a Board Certified Neuromuscular Neurologist who specializes in neuropathy, you have found a great resource. If this neurologist works with patients with MS this is a great sign of competence in the field of neuromuscular medicine.

    Then learn all you can about peripheral neuropathy. You do not need to become a doctor or a neurologist as that takes years of training! Look at the Resources TAB in this web site and obtain the books by Latov, Cushing and Berman. Then make them your medical Bibles. They are gold mines of information and the one by Cushing will help you learn of things available to the patient given the many challenges of neuropathy.

    You will find in Cushing’s book ideas that work for patients that doctors may not be aware of. Not all these ideas will work for you or even be acceptable to you. The idea is to explore everything available for something that will work for you!

    A patient support group is another place where you find support, information and ideas. It was a patient who helped me solve issues with my infusion from their own experience. Sharing these with my doctor, we solved the problems! It was in the books and at the Association that I learned about a trial of gamma globulin, endorsed in an article by over 20 neurologists and this was the life saver. I shared this with my neurologist and it worked! Some neuropathy solutions are not even this complex and you may find yours in the books! Read, learn and then share with your doctor.

    The third thing I would do is order a copy of the DVD mentioned in the TAB at this web site. You will be supported, enlightened, inspired and challenged.

    Then the last thing is to avoid the “snake oil sales”. Whenever a disease is difficult to diagnose and treat, the “snake oil sales” abound. Some of the ideas and products that have been developed may help and may be worth exploring. Look for the exaggerated overstated claims. If it sounds too good to be true, it is too good to be true! For example, this product cures all neuropathies. This product restores all nerve function and prevents all neuropathies. If you have read Dr. Latov’s book understanding Peripheral Neuropathy and the causes, you will see the words that should alert you to false, overstated or misleading claims.

    Look to see if it is approved for payment by Medicare or other insurance. While not a total guarantee, this may mean that some testing and research has been done. If the company wants payment up front with no insurance payment possible, I would not go there, as they need to do the controlled studies to establish effectiveness, limits and risks.

    Another helpful clue is the trial period. Does the company state that if the product does not work for you, you may return it after a trial period and receive a refund? Many good companies acknowledge that no product works for everyone, especially the neuropathy patient with neuropathic pain or symptoms throughout the entire body. This is reality, so a money back trial period is a good thing and shows responsibility.

    The important point is not to give up and stop looking. I spent 31 years looking for help with none provided, losing two great promising careers. I spent another four years looking for help only to face numerous insults and incompetence.

    The late Mary Ann Donovan of The Neuropathy Association shared one important point in my desperate hour of demolished hope by a so called neuropathy expert who said, “Patient is claiming to have something he does not have.” That Neurologist had thirty years plus of medical history, an abnormal EMG and an abnormal Nerve Conduct study. After thirty years of illness I had some hope, but my hope was destroyed. Desperate, I called the Neuropathy Association in 2000. Mary Ann said, “The doctor is not your problem, your problem is your disease, so keep looking for someone to help.” Great advice! She saved my life because I found an answer four years later with a skilled Neuromuscular Neurologist.

    Courage and determination are important assets to the neuropathy patient and my hope is that with increased research and clinical training such experiences will become a thing of the ancient past. Feed your courage and determination!

Causes of Neuropathy

  • What causes Peripheral Neuropathy?

    There are many causes of peripheral neuropathy, including diabetes, hereditary disorders, inflammation, infections or autoimmune diseases, protein abnormalities, compression or physical trauma, exposure to toxic chemicals, poor nutrition, kidney failure, chronic alcoholism, and certain medications – especially those used to treat cancer. In some cases, however, even with extensive evaluation, the cause of a person’s peripheral neuropathy remains unknown – this is called idiopathic neuropathy. Approximately 30% of neuropathies are “idiopathic,” or of an unknown cause. Through better research the number of those diagnosed as “idiopathic” must be reduced!

    There are hundreds of causes of neuropathy, known and unknown. Yet with peripheral neuropathy the attitude is that it is just a symptom of an illness and not therefore a disease.

    The point is that by 2000 (three decades plus of symptoms) I was severely disabled having lost two great careers because peripheral neuropathy was only a symptom of something else. Sounds good, but If you do not have what is claimed causes neuropathy, it is too often assumed you must not be ill or have neuropathy! For four decades that was the conclusion and attitude for my symptoms. Lack of proof of a connection is NOT proof there is none; it only means we need to do the homework of research.

    Unfortunately, approximately 30% of all neuropathies are “idiopathic,” or of an unknown cause. Our challenge is to decrease this number by building better attitudes in the medical schools, increasing awareness, conducting more research, and providing better clinical training for doctors and tools for diagnosis and treatment.

    In another 30% of cases, the cause is diabetes. This may be due to the fact that we have limited understanding and tools to diagnosis all causes, driving this perception about diabetes higher on a percentage basis. For example, one of the major symptoms recently understood of amyloidosis, especially in veterans exposed to Agent Orange, is idiopathic peripheral neuropathy and testing is not done because we hold onto the observed clinical entities for too long, as in you must be diabetic to have these symptoms. I have observed that diseases you cannot diagnosis are usually rare.

    Other causes of neuropathy include autoimmune disorders, tumors, heredity, nutritional imbalances, infections or toxins, but the list is even longer. One of the best sources for patients to understand the causes of the neuropathies is Dr. Norman Latov’s book listed in the resource section on this web site.

    If we address the cause, motor, autonomic and sensory symptoms, this approach may help cure or reduce the impact of the neuropathy preventing serious disabilities. However, we must understand that research MUST be done if we are to force changes to the observed and assumed clinical entities important to research and a clinical approach to treatments. Assumptions without research die hard. Too often doctors stop short of performing the testing necessary due to old assumptions, poor attitudes toward neuropathy, limited treatment options, the insurance pressure to process patients, restrictions on payments for testing, lack of diagnostic tools or clinical training, or just the general failure to understand the potential serious impact of this undiagnosed and undertreated disease.

    Yet even in this world of uncertainty for the patient and the doctor, it is important that patients increase their knowledge so they may work as a partner with the doctor until research provides better answers.

  • Does Agent Orange cause peripheral neuropathy?

    Yes.

    For decades medicine and the VA claim that Agent Orange did not cause neuropathy or cancer or any serious illness whatsoever.

    The research findings of the Environmental Protection Agency and others were ignored as these agencies stated that it did cause neuropathy and was a dangerous toxin. (1969 to 2000).

    As it slowly became difficult to deny what was obvious, the reasoning continued that if dioxin in Agent Orange does cause neuropathy, it must only be the acute and subacute types.

    When it was known that toxins including dioxin from Agent Orange are stored in the teeth, fat and bones of the body for decades the ‘experts’ claimed that the residual dosage was too low to cause an illness or chronic neuropathy decades later.

    In the 1990’s it was claimed Agent Orange did not cause cancer (wrong again – thousands of veterans died without help – and the VA spent millions fighting their law suits in the 1990’s) until research in 2007 showed the VA wrong.

    Meanwhile thousands of Vietnam Veterans, exposed to Agent Orange with cancer decades earlier, died. Now we find out that cancer causes Peripheral Neuropathy and may be one of the early symptoms, let alone the fact that neuropathy is caused by chemotherapy and radiation treatments.

    Click here to read more about Agent Orange and Peripheral Neuropathy

    Helpful Articles

     

    agent-orangeThe Dark Shadow of Agent Orange By this ill-conceived policy we provided the communists in Vietnam the moral basis to win, if even by default. While my best friend Dr. Poff as we knew him and others worked to win the minds and hearts of the Vietnamese people, providing medical help to the Vietnamese, our leaders were spraying on all of us, a legacy of horror, for many in Vietnam and for the veterans who fought in that war… READ MORE

    C-123Air Force C-123 fliers exposed to Agent Orange Recognized by IOM! Retired Air Force Maj. Wes Carter joined by the members of the C-123 Veterans Association worked for years to have the Veterans Affairs Department (VA) recognize illnesses they’ve… READ MORE

    Why-IVigFacts About Intravenous Gamma Globulin (Article 1 of 12)By LtCol Eugene B Richardson, USA (Retired) BA, M.Div., Ed.M., MS (Counseling) and patient with CIDP/Autonomic Peripheral Neuropathy for over 45 years due to Agent Orange… READ MORE

    Neuropathy-Journal-thumb-42012 Veteran Shares AO and PN Approval! Rev. Larry K. Loree Sr., US Army, 68th Med Group, combat medic, Vietnam Vet 1966-67 writes: Several years ago I communicated with you by email, then again about one year ago after you… READ MORE

    agent-orange-1Agent Orange Continues Its Toll on Veterans While many highly respected neurologists continue to deny that Agent Orange could cause chronic neuropathy, finally in 2012 the VA began to recognize the obvious about chronic neuropathy and Agent Orange with the recognition by the National Institute of Health… READ MORE

    List-of-Navy-Ships-VA-Presumptive-for-Agent-Orange-ExposureList of Navy Ships VA Presumptive for Agent Orange Exposure The VA just recently added some U.S. Navy ships to the list where presumptive exposure to Agent Orange is recognized during the Vietnam War. If you have already submitted a claim for… READ MORE

Diagnosing Neuropathy

  • How is Peripheral Neuropathy diagnosed?

    Diagnosing peripheral neuropathy is often difficult because the symptoms are highly variable. A thorough neurological examination is required and involves taking an extensive patient history (including the patient’s symptoms, work environment, social habits, exposure to any toxins, history of alcoholism, infectious diseases and family history of neurological diseases.

    A general physical examination and related tests may reveal the presence of a systemic disease causing nerve damage. Blood tests can detect diabetes, vitamin deficiencies, liver or kidney dysfunction, other metabolic disorders, and signs of abnormal immune system activity. An examination of cerebrospinal fluid that surrounds the brain and spinal cord can reveal abnormal antibodies associated with neuropathy. More specialized tests may reveal other blood or cardiovascular diseases, connective tissue disorders, or malignancies. Tests of muscle strength, as well as evidence of cramps or fasciculation, indicate motor fiber involvement. Evaluation of a patient’s ability to register vibration, light touch, body position, temperature, and pain reveals sensory nerve damage and may indicate whether small or large sensory nerve fibers are affected.

    Based on the results of the neurological exam, physical exam, patient history, and any previous screening or testing, additional testing may be ordered to help determine the nature and extent of the neuropathy.

  • What are the tests to diagnose the cause of a neuropathy?

    Have you ever had the Pa Kettle Experience? You may remember in the movies of the 40’s or 50’s, Pa Kettle sitting on the porch of his falling down log country house during the depression, the screen door keeps slamming shut and is falling off plus a loose board under his rocker is making a horrible noise and is about to give way. The cause of the noises are obvious and Ma Kettle gets on his case to fix these problems and he quietly continues rocking in his chair saying in a long very slow country draw, “Guess I have got to fix these one of these days, Ma” while continuing to rock away on the porch. Sometimes our neuropathy symptoms are just an annoyance and we ignore them for years.

    We all have had a car with a noise that suddenly develops and we tolerate the noise or strange behavior of our car. Its cause is not so obvious so we refuse to deal with it. Then the noise or behavior of the car increases until you finally give in and take the car to the expert. You tell the mechanic what is going on, they do all the testing with fancy equipment, take the car for a test drive, then tell you “All the tests are normal”, charges you $300 and you leave. Then as you drive into your driveway back home and are about to park, what do you hear? Yes, the noise? Screaming would be allowed here and this is exactly what a neuropathy patient all too often experiences when going for help!

    What is important here is to realize, when you take your neuropathy symptoms to the doctor and the doctor tells you all tests are normal, this only means that out of all the possible causes for your neuropathy, what they tested for is not one of the causes. This means that more testing should be done.

    One of the best documents I have seen for testing was passed out at the 2010 Neuropathy Summit in Washington DC and was written by one of the speakers. It is titled Living with Neuropathy Diagnostic Tools and Symptom Assessment by Dr. Marc M Trelhaft MD. Dr. Norman Latov MD also produced a testing document that was published by The Neuropathy Association some years ago.

    If a doctor does not know what tests to run or what is appropriate for a given neuropathy, it is unlikely that the correct test will be run. Nerve muscle biopsy is seldom needed according to many experts, yet this is what is so often done even at the risk of complications and residual problems for the patient. When I finally had a neurologist helping me in 2004, he was amazed that no one thought of doing a spinal tap to look at protein levels! No one thought of doing evoked forced potentials to check to see if the large medical history of autonomic neuropathy could be confirmed. No one thought of doing a skin biopsy to see if there was small fiber damage. Exposed to Agent Orange, a known carcinogen and toxin, no one thought to do the special blood work with dye, or a fat biopsy or a bone marrow biopsy to test for the abnormal protein or developing cancer that often occurs in veterans exposed to Agent Orange. If the doctor is unaware of what tests to run, how could he do the testing?

    Again, we need more clinical training for neuropathy, more research with the development of better testing for diagnosis before damage is done to the nerves, better options for treatments and better tools for the neurologist who does care and is committed to the neuropathy patient.

Neuropathy Symptoms

  • What is the progression of symptoms for Peripheral Neuropathy?

    While every person’s experience with peripheral neuropathy can be as unique as the individual, there are some common neuropathy symptoms and signs.

    At first, you may notice numbness, tingling, abnormal sensations, or pain in your feet. Some people feel like they have socks on, even though they are barefoot. Over time, this feeling spreads to your legs and hands.

    You may find it harder and harder to walk. Your legs feel heavy. You have to drag yourself up the stairs. You find yourself losing your balance, not being exactly sure where your feet are; so, you stumble into things or fall. To keep your balance, you are likely to widen your way of walking, and walking becomes less rhythmic or fluid.

    As for your hands, you think you have a good grip on something, like your keys, but they drop right out of your hands. In the worst cases, you can end up in a wheelchair. Some neuropathies can be fatal.

    Peripheral neuropathy symptoms and signs can vary in how they begin. Some neuropathies come on suddenly; others gradually over many years. There are three types of peripheral nerves affected, and symptoms depend on these nerves and their location:

    * Sensory Nerves: affect sensation

    * Autonomic Nerves: affect internal organ functions; and,

    * Motor Nerves: affect muscles.

  • What are the top 20 symptoms of Peripheral Neuropathy?

    Limited understanding of the clinical symptoms peripheral neuropathy by medical practitioners too often results in the failure to support, diagnose or even recognize the many symptoms and types of peripheral neuropathies that have been identified.

    In general, the symptoms of neuropathy are determined by the cause and type of neuropathy (motor, sensory, autonomic) along with whether the damage is to small fibers and/or large fibers and/or if the damage is to the axon (the nerve) or the myelin (nerve covering).

    Due to the neuropathic nature of the disease, it will appear that there are no physical causes for these symptoms.

    In most cases the disease affects the feet, legs, and hands first, but not always. Neuropathic pain is caused by damaged peripheral nerves and may include:
    1.tingling
    2.electric shocks
    3.numbness
    4.weakness
    5.heaviness of limbs
    6.inability to control movement of feet or hands
    7.burning sensations
    8.dizziness
    9.muscle cramps
    10.loss of feeling on light touch
    11.feeling like you have gloves or stockings on hands or feet
    12.difficulty with balance and loss of position sense
    13.inability to feel correct water temperature
    14.feeling of severe pain when anything touching the skin
    15.inability to feel normal pain
    16.loss of lower body sweating and increase in upper body abnormal sweating
    17.alternating diarrhea and constipation
    18.incontinence
    19.non-cardiac tachycardia
    20.breathing difficulties

    For a more in-depth discussion please click here: Symptoms of Neuropathy

Neuropathy Pain

  • What is neuropathic pain and neuropathic symptoms?

    One of the most comprehensive treatments of neuropathic pain was given at the Washington DC Neuropathy Summit in December 2010 by Dr. Sudhir Diwan, MD Neurologist titled Understanding Neuropathic Pain is Key to Managing It. To request a copy of this document send an email to gene@neuropathysupportnetwork.org and request document #PM 35.

    Understand that some neuropathies involve symptoms, but not pain. Multifocal Motor Neuropathies and there variants are motor neuropathies and not sensory or autonomic neuropathies. Thus these neuropathies involve the inability to move muscles rather than messing with your sensations of touch or the internal systems of the body. If the motor nerves are damaged, this often does not present with pain, but with the inability to control the muscles affecting the feet and hands, so although this is understood in MS, few are aware that this is a fact of life for patients with a motor type Peripheral Neuropathy. Dr. Latov’s book talks about the idea of neuropathic pain and symptoms.

    Only recently have we begun to understand neuropathic symptoms and pain and for some doctors even accepted them as a reality. To add to the nightmare, I remember the boss who played doctor and assumed that all of this pain and the symptoms were due to my inability to handle stress and my working too hard! His punishment was to take away salary and force me to work part time!

    Neuropathic pain is not like other types of pain and will not respond to the normal pain medications. The reason for this is that in normal pain, if you put a burning match to your foot you feel normal pain and that pain signal is sent to your brain allowing you to protect the foot by removing the lit match. However, in neuropathic pain or symptoms there is no match or flame touching the foot, but the peripheral nerves have been damaged and so these damaged nerves are sending a message of pain back to the brain. If you say your foot is burning and there is nothing touching your foot, they of course will look at you like you are crazy. But you are not crazy; you have neuropathic pain or symptoms from damaged peripheral nerves. This really gets difficult when you tell someone your foot feels numb (this is damaged nerves no longer working) and there is burning (damaged nerves sending this single to the brain) at the same time. How on earth can your foot be numb and yet feel pain? We are a strange bunch!

    The answer is: Neuropathic pain is caused by damaged peripheral nerves and may include sensations of numbness (no feeling) or extreme painful sensitivity to touch, electric shocks, burning, tingling, overflow incontinence, digestive problems of bloating or alternating constipation and diarrhea, problems with sweating, absence of tearing, difficulty breathing or swallowing, bone pain, muscle cramps, strange feelings like balloon feet or socks and gloves on when they are absent. The most important thing to realize is that you are not crazy, but you probably have damaged peripheral nerves and deserve to be treated medically and with respect. Now realize that many diseases may cause some of the above symptoms, but peripheral neuropathy, given your medical history and total symptoms, must be considered by the doctor as he evaluates your illness.

  • How is neuropathic pain treated?

    Neuropathic pain is currently treated primarily with two classes of medications. This would be the anti-depressants and the anti-seizure medications and Dr. Latov speaks of these and other medications used for neuropathic pain. It has been discovered that these medications do help many neuropathy patients, but sometimes the side effects are worse than the symptoms and so each patient must decide if they are worth using. The dosage and the combinations of these medications must be worked through by the patient with the doctor in a patient trial and error. As of now, I know of no other way to find what works for you.

    SPECIAL ALERT 2014: The one issue that is new is that the use of the drug Cymbalta for a protracted time period, the withdrawal from the drug can cause serious problems according to one news article on the subject. I personally think anyone who has the drug Cymbalta suggested may want to speak to the doctor about the use of Nortriptyline instead (an older drug with a proven track record) and it worked at least for me when the anti-seizure class of drugs caused some unwanted side effects.

    This is where patient awareness of the pain scale 1 to 10 is very important as you communicate with the doctor, working through the issues of what works and what does not work. Remember, if 10 is the level of pain where you pass out and 1 is just a nuisance, then 5 is where your ability to perform daily tasks become very difficult and by 6 impossible. With practice, it will amaze you how skillful you can become. There are times when pain or other symptoms are better expressed in a range over a period of time. Examples would be the burning sensations have been a 2 to 4 or a 4 to 7 helping you and the doctor see where you are with the medications. But remember, if you get 80% relief from pain, this may be as good as it gets with current options.

    The specifics of these medications are listed and many other options are discussed in Dr. Latov’s and Mims Cushing’s books listed under the resource tab of this web site.

    The burning sensations are a very common problem and the options for treatment are discussed under the separate question about the burning sensations in this FAQ tab. From the experience of patients, the medications above seldom help with these burning sensations.

    Opiates are often used for break through pain and for some are very helpful. It is recommended that every option be worked through carefully before using the opiates as they often require increasing dosages with unwanted side effects that become more of a problem than the symptoms you are trying to address. Too many patients have requested help to withdrawing from opiates, as they became a problem worse than the neuropathy. The medical professionals I speak with DO NOT ever recommend the use of the opiates. Every day I have patients write to tell me how desperate they are to get off the opiates! The opiate drugs will eventually become more of a problem than your PN and the body will keep demanding more and more. Work with the doctor to discover what does work for you as noted. If your doctor does not work with you on this, find another doctor as every patient is different. Remember for neuropathic pain, if you get 85% relief this is probably as good as it is going to get until medicine discovers better options.

    Dr. Latov in his book and many neuropathy patients have reported reducing pain by the use of Alpha Lipoic acid (600 to 800 mg) especially pain from diabetic neuropathy.

    You may also want to find a good Psychologist to help with cognitive therapy to find ways (relaxation techniques, visualization techniques) to utilize your own body’s ability to increase natural chemicals which we know reduce pain. This may sound strange, but they can teach you techniques to help in this regard and it sure is worth a try. There is a good Psychologist from the University of Alabama by the name of Beverly E. Thorn, PhD, A.B.P.P, who spoke of this very issue at the Neuropathy Summit in Washington DC in 2010. She or her staff may be able to recommend someone in your area.

    See the question on physical therapy and exercise in this tab and if you want a complete discussion of medicines for the treatment of neuropathic pain, read Dr. Latov’s book (see Resource Tab at this web site).

  • What can I do about the burning sensations in my feet and/or legs?

    For the burning sensations you may wish to try products or treatments that other patients have found helpful with varying success.

    Some patients have found that the cream called Sarna Original available over the counter at any major drug store has helped. It was recommended by Dr. Ramkissoon MD Neurologist in Sebring, FL. This is an anti-itch cream that works by numbing the nerves at the surface of the skin that are sending neuropathic signals of burning.

    Other patients have been prescribed Lidocaine patches for the burning pain as noted by Dr. Latov and patients report that these help reduce the burning.

    Compounded topical creams are often prescribed by the doctor and the benefit is the absorption into the blood is limited and it tends to stay concentrated to the area you need it the most according to Dr. Hunter.

    Some of the ingredients Pain Management physicians use includes lidocaine, ketamine, gabapentin, and amitriptyline, mixed by a compounding pharmacy in percentages as prescribed by the doctor

    Mims Cushing’s book, patient’s report that another option patients have found helpful is to soak your feet in cold tap water for 15 minutes before going to bed. The cooler water helps by calming the nerves. DO NOT USE FREEZING ICE WATER as with sensory neuropathy this could cause damage to the skin. For those with the sensation of very COLD feet, these patients have found that doing the same with warm tap water (NOT HOT) has a soothing effect. Again, it is what works for you in treating the strange effects of neuropathic pain from damaged peripheral nerves.

    It is advisable to speak with your doctor before trying any treatment.

  • What about muscle cramps?

    While Dr. Latov recommended quinine water use in his book on PN for leg cramps which has been a successful treatment for many for decades, quinine water has since been banned by the FDA if used without close medical supervision. ( See Drug Products Containing Quinine) Other patients have had levels of potassium, calcium, salt, and other substances critical to proper function of muscles, tested to see if they are low. Patients have also found that eating a banana at night keeps the cramps away, or eating a Tum to increase calcium, or eating salty olives or pickles if your salt levels are low work. If you take a diuretic, muscle cramps are common and may require supplements.

    Some neuropathy patients have noted that the drug Venlafaxine that this drug resolved restless leg syndrome and the associated leg cramps. Dr. Levine states that this drug changes the levels of serotonin and norepinephrine (two neurochemicals) in the spinal cord and can be effective in patients with neuropathy.

    A patient with severe muscle cramps should report this to his/her doctor for evaluation.

  • Why do my symptoms and pain seem to come and go?

    Wow, I sure wish I knew, but EVERY neuropathy patient has had this experience. Be assured, It is not psychosomatic.

    Neurologists confirm that there are acute neuropathies that come on suddenly and then the symptoms disappear. In other neuropathies symptoms occur, disappear and then return at the same level. Other neuropathies occur, disappear and then return at increased levels and in more places of the body. Others come, go and then go away for years only to return with a vengeance! The chronic neuropathies and polyneuropathy are often referred to as progressive polyneuropathies. The mystery is increased as there seems to be no rhyme or reason for these patterns. The only thing I noticed is that when I increased activity, I have increased burning and I would guess that this was due to making damaged nerves work. I am sure that there might be some very brilliant doctor out there who has some clue as to why this is true and if I find out I will post it in patient language.

    Coming and going (remitting and relapsing) of symptoms with a neuropathy is a medically confirmed fact. Better recognized, the same is true of the symptoms of some forms of MS! You are not crazy.

  • Do neuropathy patients ever get 100% relief from neuropathic pain?

    I am sure there may be a lucky few, but for most of us, if you get 80% relief from neuropathic pain, this may be as good as it gets. Further neuropathy research may provide more answers.

  • Do all neuropathies cause pain?

    No.

    Often in the motor neuropathies there may be no pain, just problems with moving and controlling muscles.

Exercise and Neuropathy

  • Does physical therapy or exercise help neuropathy?

    Yes.

    “Appropriate exercise is a vital part of any CIDP (an immune mediated neuropathy) intervention plan because of its potential to improve strength and endurance, thereby minimizing muscle shrinkage and improving function and mobility.” This quote is from an OUTSTANDING article in the August – September 2010 issue of I.G. Living (IGLiving.com). The article was written by Mathew David Hansen, DPT, MPT, BSPTS who practices in Washington State.

    Hansen’s key words are “appropriate exercise” for those with any neuropathy. His “FITT principle” meaning that exercise must be focused on frequency, intensity, time and type of activity, in response to the neuropathy patient’s physical state is essential. These principles are the essence of what I have written about and this has been confirmed numerous times in my experience over the years. Even today some physical therapists believe that if patients adhere to a regular exercise regimen, over time, they notice that their overall pain levels decrease. They state that the difficulty for most neuropathy patients is to overcome the initial increase in pain that comes with exercise.

    I contend that the problem here is not with the neuropathy patient, but with the failure to apply the principles stated in Hansen’s article. Any increase in neuropathic pain during exercise or physical therapy is the bodies signal that Hansen’s principles have not been applied. It is the signal that something in the exercise or physical therapy must change and not that the patient must be challenged to work through the neuropathic pain. The issues of exercise for the neuropathy patient, whether CIDP or other neuropathies, are more complex than working through the pain might suggest.

    2014 UPDATE: Matt Hansen, D.P.T. Doctor of Physical Therapy has just produced a DVD on exercise which applies Matt’s principles. Matt is an advisory member of the Neuropathy Support Network and I have known the work and principles of Matt since beginning the NSN. I know that Matt understands neuropathy and I would highly recommend the DVD. To purchase a copy ($19.99 +S&H) visit www.freedom2move.org then go to the bottom of the page and click ORDER; then click to order Vol. 1; then click on the video and make sure you enter NSN10 in the special order purchase as this will provide 10% of your purchase to support our Neuropathy Support Network, but only if you want that to happen.

    Exercise is very important for the neuropathy patient. If physical therapists apply Hansen’s ideas, then they will do a great service for the neuropathy patient.

  • What about walking and balance problems?

    Patients who have problems with balance and walking should ALWAYS use a cane or some other device to avoid the dangers of falling. Serious Injuries from a fall is all a neuropathy patient needs! Even if you do not feel you have a walking problem, but have what is called “foot drop” where the foot unexpectedly drops forward, catching the floor, and causing the patient to trip, the patient should always have a cane or some device to help prevent the fall in these surprise events. The use of the drug Venlafaxine according to Dr. Todd Levine, (Clinical Assistant Professor of Neurology at the University of Arizona) is often used for neuropathy when the patient has serious balance and walking difficulties making it very difficult to make the legs work.

 

If you have a question and/or comment please consider sharing them on our Facebook page by clicking here. After all that is what we are all about – “Patients Helping Patients”

 Add a Comment