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

     
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    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

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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 Peripheral Neuropathy symptoms?
    Limited understanding of the clinical symptoms of 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.

 

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Comments

  1. Debbie  January 24, 2017

    In October of 2016 I got numbness in my right foot followed by numbness in my left foot I have numbness and tingling not my legs I have paraesthesias tingling prickly kind of feelings over a lot of my body my scalp. I had nerve conduction studies done which I was told her abnormal I had a EMG done which showed chronic distal sensorimotor polyneuropathy with axonal and demyelinating type. Labs have been normal except for a low vitamin B12 level and a very low Vitamin-D level. I’ve been told that this is not MS but that I need to go see another neurologist who specializes in neuropathy also had visual evoked potentials done which were abnormal and I’m told that I need to go see a neuro opthamologist. Can you please explain to me what this means is this a progressive disease is this something that is affecting my eyesight and my hearing as I have terrible tinnitus. Thank you so much for any information you can give me.

    reply
    • Debbie  January 24, 2017

      Numbness and tingling in both legs, sorry.

      reply
  2. Mary Lewin  January 16, 2017

    I had a positive biopsy for SFN. I have had long-term pre-diabetes. I don’t know if this is causing it. I also have elevated sed. rate for years. I don’t know if mine is related to diabetes or not. Does anyone have low IGM? Mine is always just barely normal. I am in Pittsburgh and have had trouble dealing w UPMC neurology department.
    I was in bad accident years ago. Started having problems w neck turning to side and tremoring and legs hurting.
    Can someone help me. Dr. Oaklander’s lab did biopsy. She is at Mass. General and cannot see anyone for a year.

    reply
  3. Capt Vassar  January 14, 2017

    Hi. ColEugene

    In January of 1978, a fire captain, I was injured at a fire when a piece of plaster from pulling the ceilings got into the exhalation valve on my Scott Air Pac, holding it open. That was in Jan 1978. I was unconscious when taken to MCV, where I spent 6 weeks, under the treatment of a multi-discipline team of doctors, psychologists, social workers, nurses. I was released as suffering from permanent brain damage. This diagnosis was checked and confirmed by the city doctor and the state doctor. I could not walk without a Canadian crutch, and then I lived on anti-vert, for movement in any direction seemed send my brain rocketing in that direction. Concentration made me dizzy. I had little sense of where my hand and feet were unless I were looking. I could not flip my hands or feet in an unbroken rhythm. My left side, especially, could was out of sync, and over time atrophied despite my efforts to exercise each equally. I had a slight tingling in my left foot. I did have instant strength, though my muscled fatigued easily. I often bit my tongue. In general, I had had the basic symptoms of neuropathy. My condition was stable for a number of years, but in the 1990s, out of the blue, it got much worse, then died down, then flared up again and began to grow worse by the week. Scared, I went to USF and saw a doctor who specialized in toxic poisoning of the brain. He took one look at my MRI and showed me the brain damage, which he said was likely a worsening of the CO2 poisoning. But he said there was nothing he or anyone could do. I started researching the literature and found Life Extension Foundation. Guided by their protocols, I began taking supplements, such as acetyl-l-arginine and alpha-lipoic acid. As time went on and new protocols appeared, I added other supplements, most recently Cognitex. My neuropathy has steadily gotten worse, like the coils of an anaconda squeezing the life out of me.

    My physician ordered an MRI. The radiologist said the scan was consistent with a diagnosis of NPH or could indicate MS. My physician sent me to see a neurologist who specializes in MS. To make matters worse had developed severe spinal stenosis from a back injury I got at the same time as the exposure to CO2. So as to eliminate the confounding effects of the two problems, I saw a highly rated spine surgeon who performed a laminectomy at L5-S1 and L4-L5. After nearly a year, I am worse off. I then went to the neurologist who specializes in MS. He cleared me of either, and managed to distinguish between the neuropathy and the spinal issues as reflected in nerve conductance and other tests. The only thing he could offer to help me was a Lyrica-type drug that might worsen my condition. And I really don’t have what I call pain. Pain is when due to my clumsiness and thin skin, I crash into something and get a bruise, cut, or tea that then gets encrusted with spot psoriasis, which I also have. Or when, as was true in the first stages, when I got stabbing pains at random spots on my body. The buzzing and numbness that plague me from head to toe really don’t bother me but the aching in my back does. All my muscles tire quickly, including my back muscles, especially them. So I can go from being free off aching to screaming uncle within a minute or two. And once the ache becomes a pain, it sticks around.

    Col, I am at my wit’s end as to what to do. I have every single one of the symptoms of MS, and brain scarring that resembles MS. Yet my current neurologist tells me that don’t have MS but damage from CO2 that leaves me with what this site calls idiopathy. My neurologist also tells me that my neuropathy won’t kill me. Yet this website and others say it can. So does my body, as with the passing of every month I can do less, and less, and less. I even eat less and less and less, as my digestive system refuses to accept the food. I am for the first time having some problems holding my pee, especially because of gas and bloating. I was always an exercise nut, now if I so two set of ten reps on my machine, I’m dead the rest of the day. But I have difficulty sleeping more than 5 hours, and I do, I wake up feeling tired enough to die, so numb my vision is clouded, unable to chew my food properly, so discombobulated I can hardly get to a urinal, and feeling like my back is broken. I have always sworn that I will not go down without a fight. Poet Dylan Thomas wrote: “Don’t go gently into the good night. Rage, rage against the dying of the light.” But as Shakespeare might have said, “Age doth make wimps of us all.” So perhaps will go out like those in T.S. Eliot’s Wasteland, and go out unable to do more than “whimper.”

    reply
  4. Carol  October 21, 2016

    You can add 19,000 volt electric shock to the many causes of neuropathy.
    My whole body is involved and there is no relief. If anyone
    Finds relief for their pain, I commend you.

    reply
    • LtCol Eugene B Richardson, BA, M.Div., EdM, MS
      LtCol Eugene B Richardson, BA, M.Div., EdM, MS  October 24, 2016

      Carol: I will send you information by e mail that may help.

      reply
      • susan  November 6, 2016

        I have SFN confirmed by an ankle and hip biopsy by Norman Latov at Columbia Presbyterian. I’m finding that walking is becoming painful – feet hurt when I get up to walk – and awful morning pain all over. Should I just expect this morning pain to become worse? Any suggestions to alleviate it somewhat as it’s beginning to affect my mood and functioning. I am on lamictal and methadone as my pain management doctor told me that it is the only narcotic that “covers” nerve pain. She is very strict about follow-ups, urine tests, etc. Is there anything else that I could do to prevent progression?

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        • Good luck  December 2, 2016

          I am having tremendous luck with cannabis

          reply
  5. Dave Dunn  October 8, 2016

    A few months ago my feet kept falling asleep. Then I started having pain in my feet and some tingling. Orthotics have helped the intense pain but the light tingling continues, it comes and goes and is some days in one foot and some days in the other or both. Some days no tingling at all. I’m also occasionally having some tingling in my pinky but that seems to be related to how I sleep.

    Weirdly, I have no tingling or pain at night or when laying down. I’ve had nerve conduction tests and they are normal as is all blood work. I’m seeing a 2nd neurologist who seems to be willing to dig further including a brain MRI. I’m trying to figure out if my symptoms are similar to other neuropathies or if it is more likely due to years of running without insoles. The biggest problems started after a new pair of shoes and rigorous training. But the symptoms seem a lot like neuropathy. Would appreciate any guidance or insight. It consumes me trying to ensure I eliminate any contributing issues.

    reply
    • LtCol Eugene B Richardson, BA, M.Div., EdM, MS
      LtCol Eugene B Richardson, BA, M.Div., EdM, MS  October 10, 2016

      Dave: Symptoms of nerve damage or entrapment do remit and relapse (come and go). Sounds like the training (exercise) may be entrapping or affecting the nerves. However, a simple skin biopsy for small fiber neuropathy might be in order to rule out such damage to the small fibers. The tests you have had will not identify small fiber damage. Also you can have symptoms of neuropathy BEFORE damage to the large or small fibers shows up on tests. Diagnosis is done by your symptoms and medical history! Will send E mail with more information.

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      • Dave Dunn  October 12, 2016

        thank you. I look forward to your email. Frustrating that I “could” have something but even a biopsy might not tell me if I’m at the earliest stages. I’m at least not feeling “PAIN”, it’s more tingling and annoying when it occurs. Not sure it will qualify as neuropathy but if it is, I want to get ahead of it as far as I can!

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      • Beth powers  October 17, 2016

        Eugene B Richardson, BA, M.Div., EdM, MS , I just sent you a reply about ivig theraphy. I have family in Florida if u know if a neurologist there that would possibly treat my SFN. It’s all over body and this burning is so miserable. It’s tolerable on the LDN when I’m not having a flair up. I’ve had the biopsy done it was positive for SFN but it idiopathic. And it autonomic also. I’d appreciate any help u could give me or advise. I’ve watched your cd and I cried at all the pain u went through. I feel you. GOD bless you and I’m sure he will thank you for helping everyone. Your such a blessing

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      • Benjamin Rosh  November 9, 2016

        hi. I have had a qsart test and some other test at an EMG clinic at Ohio Staedtler University in 2014. hi, my name is Benjamin Rosh. I am 54 years old and cannot get nuerologists, spine specialists, phyaiateiats, pain doctors and Manu my other at OSU or The University of Cincinnati to even acknowledge the report..I also Habe raynauds, acrocyanosis, EMG showing cubbital tunnel and carpel tunnel (OSU EMG lab reopened results on8/22/2016, have small seizures (found after 3 seizure lab testing 1 at Mt. Carmel Hospital in Columbus, Ohio (2013) and 2 at Univ. of Cinnnati Seizure Test Lab (2014); also, have pinched nerves in neck and lower back (2008, 2012, 2013, 2014 and 2016 MRI and xrays) as well as superorbital nerve damage above my left eye. Going again to try to take a 4th attempt on Nov 17, 2016 to take anote EMG of my legs. Also not been properly diagnosed with Traumatic Brain Injury as of yet even though I have been in many car accidents since driving at age 16 to now. 2008 very bad car accident….drunk driver tore apart entire front end of a full size car. I was conscious through that 1. 2010, pronounced dead when police and paramedics came looking for me. they had no idea I washould not dead as I came through from being unconscious after a most horrific violent accident. I ran head on into 2 5,000 to 10,000 pieces of solid steel cargo on pallets. each packet broke free of their bindings, hit the freeway and made huge dents and long scrap marks for miles into the road before tumbling and hitting my car. Witnesses said my car spun around on freeway and I wax stopped in lane for over half hour before I opened the door into traffic to get out. the entire front end of the midsized car was gone and the impact waffles the vaxj of the car to push back of car into the front. I came out with a bloody nose, and a huge damaged right hand. I actually walked across the freeway through traffic to opposite side of road. looked back and thought it a dream then came across freeway to crawl atop the 8 foot high palette with one of the steel pieces which were covered up thinking it was there because a work crew from Ohio department of transportation placed them there for workers to use what was underneath in the morning ( the accident happened about 40 miles from columbus ohio north of the downtown district) . I learned of the size and dimensions of the 2 palletized units from the police who were all shocked I was alive and they had told me they were each the size of like PODS units people use when they move from place to place with their belongings. Bottom line is that was a very bad accident…… I was in and out of Trauma unit within 16 hours with no social worker helping me and with only CAT Scans of my brain, neck and back showing nothing (MRI’ s from the 2008 accident showed lots wrong with my Spine and the exiting nerves and more) and my third finger being badly broken. I returned the next day with my mother to seek help from the ER at same hospital only to be sent home with pain medicines and no help and no further work up. They are the ER kept telling me I was psychotic and needing immediate counseling. i was very quiet that day and ny thoughts and my soeech were well controlled. My mother, on the other hand, who is normally a very quiet person burst out in strongoing anger calling each Doctor an idiot. Nothing bad said otherwise – just idiots!!! Which after 6 years later and a huge amount of struggles to get doctors to even thknk.about such facts like hown can I not have numerous more nerve damages in me? how cine I still have a vety hesvily inflamed body? and, how come testsee results show numerous musculature and tissue problems.. even though the above is almost impossible to get doctors to look into further. All I get out of doctors in testing my body.is this: they eant my primary doctor to write the scripts, the referrals and to take care of everything. . She refuses stating they are the specialists abd they must do it because they have more insight. It has been a holy mess with many blaming things on my Fibromyalgia (which to me is a catch all name for things they are not interersted in loolong into) So go figure, it has been 8 and a half years with no brain trauma diagnosis or PTSD counseling; and, I live in Ohio going to the big, big name clinics with 0 lucky. And oh did I also fail to mention that on 8/20/16 I was also rear-ended on a freeway and had both my feet caught under the pedals again ;and, I had whiplash and more happening to my body. Believe it or not, there are many other diagnosis on my health summary reports given by OSU, The Cleveland Clinic, The Universitybof Cincinnati; but. doctors keel fighting me over the words printed in the sheet exokaining ny heakth issues — even though, their own doctors in different clinics had put all the diagnosis on the paper – such as, my fractured skull, my having thoracic outlet syndrome, a vocal cord dysfunction and much much more. I really fo need help in figuring what to do. i inly habe a raisedan toilet seat and a bath transfer bench with no.other home supplies and 0 home care since 2oo8 to now. With chronic pain 24/7 and so far they have not offered any Neuro – Rehab, instead having been given the same physical and water therapy over the years a couple times with no luck (I can go to the local YMCA and pay $ 100 for an 8 week course and learn more from them then at OSU (I did that and that is how I know)) . Crazy thing was I met with the Director at the Cleveland Clinic Pain Therapy Clinic and get said I was not a hold candidate right after my huge car accident in 2010 because I needed time to heal before they could take me on as a patient and then 2 more times I have tried Going back to get accepted as a patient and they said not enough nerve damage, Brain damage and other reports even though I sent them 56 reports. I am now selfor paying for my accupuncture treatments which are doing 0 and need help

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  6. Michelle Storm  October 7, 2016

    I have been dealing with a hip injury for 20 months.After I left my work comp doctor,who said I had a back injury when I continually said my hip hurt,I went to a orthopedic surgeon that said I had a labrum tear .He debreved and cut flap off.I was continually in pain .Went to another orthopedic and I hada medium minimus tear,he anchored it and I am 6 weeks out but I am having pain ,swelling,burning and needle like symptoms in my foot and leg.Just presently now in my hands.Could I have neuropathy or nerve damage and who would I see? I live in Gilson,Illinois.It has taken 20 months to get where I am at and do not want to wait if this is what is happening.PLEASE HELP!

    reply
    • LtCol Eugene B Richardson, BA, M.Div., EdM, MS
      LtCol Eugene B Richardson, BA, M.Div., EdM, MS  October 10, 2016

      Michelle: Will reply by e mail directly to you. A little behind with so many requests, but will get to you. Gene

      reply
  7. Ashley Lafountain  October 7, 2016

    Hello I have just been diagnosed with small nerve fiber neuropathy based on skin biopsy after 4 long years of test after test and specialist to specialist , although I’m happy to finally have an answer a lot of research I have done suggests that neuropathy seems secondary to another disease ? Is this something I need to be concerned with and push for further testing I’m only 26 and a mom to 2 young girls and I’m scared for how this will effect my future

    reply
  8. Nicole Johnson  September 14, 2016

    Hello,
    I have unexplained itching all over my body when the temperature outside drops below 60-55 degrees. I have had this since the fall of 2012. It is exhausting. The itching usually starts in my legs and progresses towards my head. My head and hands are usually unaffected. It is worsened by showing. I breakout in a red splotchy rash (not hives) from my feet to my face when I shower during the fall/winter. It again, usually starts in my legs. It is worsened, if cooler air from outside the shower comes in contact with my body. The rash usually lasts between 15-45 minutes. Intense itching continues until the outside temperature rises. It effects every aspect of my life. I cannot wear tight clothing. I cannot squat down, cross my legs, or bend over, or the itching is intensified.If I bend at my waist my upper back will start itching. If I cross my legs my legs will itch. I have to be careful how I lay or sit in bed, or the itching will increase. I have seen many doctors. No one has helped me. I have been tested for allergies.I have tried several antihistamines including, vistaril, benadryl, loratadine, chlorhexidine, zantac and zyrtec. I have also tried Lyrica. I have put every moisturizer, oil, and remedy I can think of on my skin. I have changed my hygiene products, soaps, laundry soap. Nothing has helped. I do not have dry skin. I have tried taking cooler showers. I don’t know what else to do. I have been referred to Cleveland Clinic, but I am unable to afford to see a doctor there. They will not accept my insurance. I am miserable from the middle of September to May every year. I take hydroxyzine 50 my everyday @ bedtime, 200-700 mg of neurontin, and strattera 40 mg in the am, pyridium and flexeril as needed. I have stopped all medications, and it did not help. I have interstitial cystitis (diagnosed 2/2012) and fiber myalgia (diagnosed 8/2012). I have been tested for Cold Urticaria. The current diagnosis is aquagenic pruritus. That does not explain why it only happens when the temperature outside drops. I can jump in a cold pool outside in the summer or indoors in the winter and nothing happens. My neurologist can not rule out SFPN. Again, the closest place I can get tested is Cleveland Clinic. Does anyone know what this could be? Any solutions or tests I could have done? Any treatments I have not tried. I even tried taking a hair dryer to my skin after a shower as a treatment for aquagenic pruritus.

    reply
    • LtCol Eugene B Richardson, BA, M.Div., EdM, MS
      LtCol Eugene B Richardson, BA, M.Div., EdM, MS  October 7, 2016

      Nichole: I will do some research and get back to you by E mail DIRECT to you.

      reply
  9. Patricia  July 30, 2016

    Are there any neuromuscular neurologists in the Chicago suburbs?

    reply
  10. Carl  July 24, 2016

    Well you have it all figured out…I feel no pain now that you told me how it is…so typical of md doctors..it’s all about there statice ..they know it and we must only have hope based on there diagnost…

    reply
  11. richard r smith  April 20, 2015

    i was in a car accident on 9/20/2012 i brroke my wrist an other old injurys that mostly made worse
    the dr was on[y worried about my other problems .as time went on he released me to my family dr
    who gave me pain meds until i went back to work in the spring well the meds wore off an motrin wouldnt
    keep the pain under control i told him i was in pain an thats why i couldnt sleep his great idea was
    to send sleep study test well all that did was put me out of work i drove a semidump cdl required
    so out of work all these thing numb right foot then left .an for years muscle spasms around my
    rib cage it happened only once in a while then after the accident it was all the time like once a week to all day on an off there so bad my ex wife said only pain she can compare it to is child birth i use to be 6ft51/2
    now im 6ft 3 i have degenerate disc disease si joint problems neck an thoracic disc problems so finaly
    dr drake of n canton oh found small cell neuropathy i dont respond well to the regular meds

    reply
    • ColEugene
      ColEugene  April 22, 2015

      Richard

      If they have diagnosed small fiber neuropathy it is likely that this is immune mediated (means your immune system is attacking your peripheral nerves), but then only a neuromuscular neurologist can diagnose the type of neuropathy. I think it is possible that your symptoms of neuropathy have nothing to do with the accident. Small Fiber Neuropathy is often immune mediated meaning that it can be treated with IVIg. See: http://neuropathyjournal.org/category/why-ivig/

      Regular pain medication will NOT help with NEUROPATHIC PAIN from damaged nerves. See the information below and some ideas on neuropathic pain.

      It is highly likely that the muscle spasms around the chest are related to this neuropathy. Muscle spasms are very common with neuropathy and I personally experience such around the chest for years before diagnosis. It has nothing to do with the lungs, but with the muscles that support breathing.

      You need to be seeing a Neuromuscular Neurologist.

      If you will send your mailing address we will send you a copy of the DVD “Coping with Chronic Neuropathy”.

      If you have any questions on Neuropathy, let us know and we will find you an answer!

      We have launched our newly revised website and if you find something does not work or there are errors or anything, please let us know. We are still in the process of making fixes on the links within articles and other issues we find and this will take some time. This is YOUR website!

      INFORMATION on NEUROPATHY:

      Explore the website http://www.neuropathysupportnetwork.org especially the ABOUT NEUROPATHY (Frequently Asked Questions click this link https://neuropathysupportnetwork.org/faq-about-neuropathy/ ) along with other resources are listed.

      THE NEUROPATHY JOURNAL has articles, more information and answers from the patients perspective. Just choose one of the CATEGORIES on the LEFT margin and the articles will appear for that topic. http://neuropathyjournal.org/

      The Frequently Asked Questions contains basic information for patients to understand neuropathy. https://neuropathysupportnetwork.org/faq-about-neuropathy/

      The best book is by Dr. Norman Latov MD PhD, Peripheral Neuropathy: When the Numbness, Weakness, and Pain Won’t Stop. Order from amazon.com for under $20 and here is the link to amazon. http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=Norman+Latov+Peripheral+neuropathy This book is our bible so to speak on neuropathy and you will learn much.

      FOR DOCTORS: If your doctor needs a textbook on the clinical aspects of the diagnosis and treatment of the neuropathies, please refer the doctor to: Textbook of Peripheral Neuropathy, edited by Peter O. Donofrio, MD, (Professor of Neurology, Chief of the Neuromuscular Section, Vanderbilt University Medical Center, Nashville, Tennessee, USA), published by DEMOSMEDICAL 2012. The book can be ordered from http://www.amazon.com.

      Our information has been reviewed by a Neuromuscular Neurologist!

      MEDICAL PROFESSIONALS AND SUPPORT GROUPS: We have launched our newly revised website, but we are still ‘fixing’ things and soon we will add neurologists/medical professionals around the country and we will have support groups listed soon. The future holds the ability for support group leaders to add information to their listing on the website DIRECTLY using a CODE we will provide them! This way Support Group Leaders will be able to even announce their special meetings.

      NEUROPATHIC PAIN AND SYMPTOMS

      As pain is an issue in a sensory neuropathy, here are two links to articles on neuropathic pain which provide helpful information. See: http://neuropathyjournal.org/how-is-neuropathic-pain-treated and http://neuropathyjournal.org/neuropathic-pain-2/#&panel1-2
      Maybe there is some simple ideas that may help, such as a topical cream that the doctor can order to help with burning pains at night (Dr. Hunter mentioned the ingredients physicians use in these compounds includes Lidocaine, ketamine, gabapentin, and amitriptyline, mixed by a compounding pharmacy in percentages as prescribed by the physician) or the idea of resting your burning skin in cool tap water (not FREEZING) for 15 minutes before bed to calm the damaged nerves. Other patients find that warm water, (NOT hot) helps rather than the cold water. These ideas come from Dr. Latov’s (MD, PhD) book and the one by Mims Cushing. Mention the formula to your doctor!
      Here is a link to information on vitamins and other alternative medications: http://neuropathyjournal.org/alternative-and-complementary-medicines-for-neuropathy/ Dr. Latov in his book for patients (see ABOUT NEUROPATHY DROP DOWN https://neuropathysupportnetwork.org/books-on-neuropathy/ pp86) speaks of the use of alpha Lipoic acid and the dosage recommended is at 600-800 a day. His book is our Bible… amazon.com under $20.

      As mentioned above, Dr. Norman Latov MD PhD of Cornell University wrote a book for patients which is sort of our Bible on the issues. It is under $20 at amazon.com PERIPHERAL NEUROAPTHY: When the Numbness, Weakness and Pain Won’t Stop. The book by Mims Cushing that is also listed in the RESOURCE tab of our website has helpful ideas from patients and again under $20 from amazon.com.

      EXERCISE AND NEUROPATHIC PAIN

      Did you know that exercise (the wrong kind for neuropathy) will force damaged nerves to work and increase the pain. See: http://neuropathyjournal.org/exercise-and-neuropathy/

      Then consider ordering a copy of the brand new DVD from Matt Hansen the expert as his perspective on exercise for neuropathy is perfect and understands what we can and cannot do, yet makes it possible for us to exercise WITHOUT the problems to keep muscles as strong and flexible as possible. See at: http://neuropathyjournal.org/exercise-for-neuropathy-dvd/ If on ordering you enter the special CODE NSN10 then Matt will give10% of your purchase price to support the work of the NSN!

      CAN YOU HELP US JUST A LITTLE WITH A DONATION?

      More information on neuropathy follows, but first know that we need the help of those who are able to help us by donating. Just like the COLOR below, we are operating in the RED every month because very few help us!

      Have we helped you? Could you consider helping us, even a little bit? Just like FREEDOM, it really is not free as someone has to pay the expenses for our work and we have no employees but the cost of running the corporation and the operation are over $30,000 a year. Too donate, please click here: https://neuropathysupportnetwork.org/blog/ and you will see a donate BUTTON on the left. Using this method through PAYPAL from countries outside the U.S. works and you can use any charge card like VISA and others. It is totally secure. Or if you prefer print and mail in the attached donation slip.

      MORE INFORMATION ON NEUROPATHY – DIAGNOSIS

      Understand that there is no one test to diagnose neuropathy as it is primarily based on your medical history and the local examination by a neuromuscular neurologist. You can have the nerve conduct test and the EMG showing no damage to the nerve or myelin (covering of the nerve) and still have chronic neuropathy. If these tests are negative they need to do a skin biopsy to test for a small fiber neuropathy (damage to the small fibers) as this will not show up in the other tests. The skin biopsy information that you need to give to the doctor is at this link: http://neuropathyjournal.org/skin-biopsy/

      The article on diagnosis is good except you need to add the diagnostic value of the spinal tap for the immune mediated neuropathies such as CIDP, MMN and other possible immune mediated neuropathies such as SFM (Small Fiber Neuropathy) and variants of GBS or CIDP. Other diagnostic information includes the following:

      For information on the skin biopsy for small fiber neuropathy testing read this article and provide it to your doctor if a SFN is suspected. (Often is the case when the other tests show no damage to the large fibers) See: http://neuropathyjournal.org/skin-biopsy/

      The other issue is the test for a hereditary neuropathy (Testing for hereditary neuropathies is done by http://www.athenadiagnostics.com/content/index.jsp and contact the Hereditary Neuropathy Foundation at http://www.hfn-cure.org ) for reliable information if the cause is illusive.

      If an immune mediated neuropathy is suspected, (immune system is attacking the nerve or cover to the nerve) the use of IVIg as a treatment. For help with IVIg access contact the Neuropathy Action Foundation (http://neuropathyaction.org/ ) For information on IVIg please read these articles at: http://neuropathyjournal.org/category/why-ivig/

      If an autonomic neuropathy is suspected, then the tests in EVOKED POTENTIALS need to be done and the patient’s history and report of symptoms need to be HEARD and considered as no test is full proof. Autonomic neuropathy is very often an element in immune mediated neuropathies such as CIDP, GBS, MMN and variants. See this article: http://neuropathyjournal.org/living-with-autonomic-neuropathy/

      For other information on ALL neuropathies contact the Foundation for Peripheral Neuropathy at http://www.foundationforpn.org

      Attached is a file providing many links to other current information on NSN and this information is for everyone, with a special notice for Veterans exposed to Agent Orange with Chronic Peripheral Neuropathy.

      If you have any questions, just submit them to us and we will find you an answer, as that is our commitment to neuropathy patients. Questions are answered in the order they are received. You may submit a question in the ABOUT US pull down and select CONTACT US on the website or control/click this link: https://neuropathysupportnetwork.org/contact-the-neuropathy-support-network/

      OUR PATIENT OUTREACH PROJECT : A PRACTICAL CALL TO THE BATTLEFIELD OF THE NEUROPATHY FIGHT!

      We have attached a POSTER that you an print in color and take to your doctor for them to display, reaching out to other neuropathy patients.

      Do you lead support groups and have a WEBSITE? If so let us know who you are as you may want to become a partner with the NSN and be listed in our E mail responses plus in the letter that goes out with all our DVD orders, soon we will have a revised website that will allow all support group leaders using a special code to place their information for patients DIRECTLY on our website! So give us your information and we will take it from their!

      We are willing to send to you a bulk order for the DVD’s for distribution and up to 50 color posters for doctor’s offices and other public areas. They are suitable for framing and are on heavy poster paper and are 8 ½ x 11. A copy of what the poster will look like is attached.

      Just let us know how many DVD’s and POSTERS YOU could get out. If you have a support group, this is a good project to get them involved in the battle.

      ● Order a copy of the DVD and COLOR POSTER and place it in your local library or medical library at a University.

      ● Order a copy of the DVD and COLOR POSTER and give to your doctor, physical therapist, nurse, mental health professional, hospital or other medical professional.

      ● Order a copy of the DVD and COLOR POSTER and give it to your infusion center.

      ● Order a copy of the DVD for your SUPPORT GROUP and show / discuss at a meeting.

      ● Make your support group aware of the articles and information on the website. (Use as guide for discussions).

      ● Encourage support group members and others to submit questions from website or gene@neuropathysupportnetwork.org and then share /discuss the answers at a support group meeting.

      ● Order a copy of the DVD and COLOR POSTER for your family, relatives, friends, community, and support network.

      A copy of the POSTER IS attached.

      With caring regards,

      reply
    • Richard smith  December 20, 2016

      This is Richard Ray Smith update it is worse than ever now on my face have had no help please send info to 2282 Seville rd Wandsworth Ohio 44281 or call 330-607-4751 thanks

      reply
      • LtCol Eugene B Richardson, BA, M.Div., EdM, MS
        LtCol Eugene B Richardson, BA, M.Div., EdM, MS  January 2, 2017

        Richard
        You will receive an E mail response… but I am two weeks behind getting to everyone or more. Gene

        reply
  12. Mary Maurer  April 20, 2015

    Hi Col,

    I live in South NJ and am close to Philadelphia PA and some parts of DE. Are there neurologists in any of these three states that you would recommend? Thanks for answering,

    Mary Maurer

    reply
  13. joe  April 9, 2015

    hello i have been experiencing Peripheral neuropathy for months now, it not that painful, rather
    it is so itchy that i could not bare, my doctor said that it a level of pain, she could not also tell why
    i am having it. Aside from neuropathy I am also having digestive problems, I could not know for sure
    what i am having. I am not diabetic. I am taking pregabalin to ease my pain, I usually have those
    “sudden bolts of pains and needles” when i am shocked, especially when it is hot.But
    it helps me a lot when i go for a long walk. I am not so sure
    what to next I have been into different specialist but they could not tell me why. There are so few
    specialist in my country ( Philippines ) .

    reply
    • ColEugene
      ColEugene  April 10, 2015

      Joe: I understand. Even in the U.S. or Europe sometimes its difficult to find a neurologist who is trained and understand how to clinically diagnose and treat neuropathy. However the number are growing daily who do understand and have the training. The one thing we do know is that only a Neuromuscular Neurologist has the training to PERHAPS help you. Look in the phone book for one who is Board Certified and treats patients with MS. This may get you closer to one who can help. It is important that the doctor do a number of tests and examinations to determine the TYPE of your neuropathy as this often will point to a cause. The tests that must be done, include the EMG, Nerve Conduct, a Skin Biopsy to check for small fiber neuropathy and evoked potentials testing as you mention digestive problems that may be a sign of an autonomic neuropathy. If you go to the Neuropathy Journal, you will see articles on the Skin Biopsy and information you would need to give to the doctor in order to have this done and also an article on Autonomic Neuropathy.

      I do not know if you have a copy of the DVD “Coping with Chronic Neuropathy”, but if not go on the website and order a copy and it will be on its way.

      The best book for patients is the one by Dr. Norman Latov MD PhD and you can get a copy on amazon.com …. just enter his name…. and the book title is Peripheral Neuropathy: When the Numbness, Weakness and Pain Won’t Stop… under $20 US. This book will help you explore the types and causes of PN and give you a better understanding.

      Be careful of the long walks as the wrong type of exercise can increase neuropathic pain. In the Journal there articles on neuropathic pain and exercise that may help. The ones on neuropathic pain mention a topical cream the doctor can order to help with the itching which can be horrible. If you have other comments and questions, send me an e mail to gene@neuropathysupportnetwork.org and we will find you answers. Col Gene Neuropathy Support Network

      reply
  14. amber  April 9, 2015

    NC..in the Hickory, Boone, Charlotte area?

    reply
    • ColEugene
      ColEugene  April 10, 2015

      Amber: Sorry this took so long.. many requests for help are coming in…. If you are in Boone and not too far from Nashville I would highly recommend the following for a consult:

      DONOFRIO, Peter D MD Director (Dr. Donofrio wrote the TEXT BOOK on PN with many other authors)
      The Neuropathy Center at Vanderbilt University Medical Center
      Rebekah Lyons, Center Coordinator
      2220 Pierce Avenue, PRB-B-1053
      Nashville, TN 37232
      615-322-7246

      However, if that is a bit far here are some in North Carolina you might want to consider.

      1. Howard, James Jr, M.D.
      Chapel Hill, North Carolina
      Dept of Neurology
      University of North Carolina School of Med
      751 Clinical Science Bldg, CB#7025
      Chapel Hill, NC 27599
      919-966-5522 919-966-5522 FREE

      2. Morgenlander, Joel C. M.D.
      Durham, North Carolina
      Associate Professor of Neurology
      Duke University Medical Center
      Box 3394 Durham, NC 27710 (919) 684-6887 (919) 684-6887 FREE

      3. Caress, James M.D.
      Winston-Salem, North Carolina
      Department of Neurology
      Wake Forest University School of Medicine
      Medical Center Boulevard
      Winston-Salem, NC 27157
      (336) 716-4101 (336) 716-4101 FREE

      They in turn may have a recommendation for a LOCAL neurologist with whom you can work. If all else fails locally, look for a Board Certified Neuromuscular Neurologist (they usually treat MS patients and this may be the clue that they might be more knowledgeable.)

      Let me know if any of this helps or not.

      With caring regards,

      Gene
      Neuropathy Support Network

      reply
      • amber  April 10, 2015

        Thanks so much for the reply..will try to narrow these down. Rheumatologist and Family Doctor both point to Fibromyalgia but I just don’t think so. Had ACDF surgery in December. Could this have causes peripheral neuropathy? Also have RA and OA

        reply
  15. Holly Johnson  April 7, 2015

    Do you have any recommendations for a neurologist in maryland to treat neuropathy?

    reply
    • ColEugene
      ColEugene  April 8, 2015

      Holly: I would recommend the follow:

      University of Maryland Neuromuscular Division
      Phone: 410-328-3100 Fax: 410-328-8981
      Address for Correspondence:
      Neuromuscular Division
      Department of Neurology
      110 South Paca Street, 3rd Floor
      Baltimore, MD 21201-1642
      New Patient Appointments:
      For new patient clinic appointments, please send or bring to the appointment:
      • A diagnosis or reason for referral
      • A recent history and physical examination by a neurologist
      • Insurance information
      • The name and address of the referring physician to whom we can send our reports
      If you do not get an appointment within 2 weeks, please call 410-328-3100

      OR if that does not work, try :
      BALTIMORE, MD – THE JOHNS HOPKINS HOSPITAL, PERIPHERAL NERVE CENTER, 410-614-9923 FOR PATIENT INFO.

      With caring regards,

      Gene
      Neuropathy Support Network

      reply
  16. Tish  April 5, 2015

    Hi, do you have any board certified neurologist recommendations in state of Washington? Thanks.

    reply
    • ColEugene
      ColEugene  April 8, 2015

      Tish: Sorry this took so long…. holiday weekend set me back in responding to folks. I would contact the following

      SEATTLE, WASHINGTON
      University of Washington Medical Center
      Dept of Neurology
      Dr. Michael D. Weiss MD
      1959 NE Pacific St
      UW BOX 356465
      Seattle, WA 98295
      Clinic 206-598-7688
      Office 206-598-4211
      EMG, PN, Neuromuscular, Certified in Neurology

      I am also going to send your request to Bev Anderson of the Western Neuropathy Association as she is very familiar with the doctors on the West Coast and she may even have a better recommendation.

      I will also send this reply by e mail.

      With caring regards

      Gene
      NEUROPATHY SUPPORT NETWORK

      reply
  17. Jason  April 3, 2015

    Hello! Very glad I found the NSN site. Do you have any physician recommendations for a loved one who is in Palm Bay, FL? I’ve also heard that a Teaching Hospital is a very good place to go for diagnosis and treatment. Any experience with one?

    Thank you

    reply
    • ColEugene
      ColEugene  April 4, 2015

      Jason: I would travel to Jacksonville or to Gainesville to see either of these two doctors:
      BERGER, Alan, MD, Director
      Patient Comment: Endorsed the DVD production of the NSN
      University of Florida Neuropathy Center
      Karen Perrin, RN, Neuropathy Center Coordinator
      580 W. 8th St. Plaza 1, 9th Floor
      Jacksonville, FL 32209
      904-244-9922
      E mail: Karen.perrin@jax.ufl.edu
      Karen S. Perrin, RN/BSN
      or
      GAINSVILLE FL
      Dr. William J. Trigg’s, MD, Neurologist ,
      Shands Medical Plaza
      2000 SW Archer Road, 3rd Floor,
      Gainesville, FL 32610
      Appointments: 352-265-8408 OR 800-749-7424 FAX 352-273-5575
      With UF who is recommended by CIDP patient

      With caring regards,

      Gene

      reply
      • Jason  May 6, 2015

        Thanks Gene!

        reply
  18. Kendell Martin  April 1, 2015

    Can you recommend board certified neurologists anywhere in the US, and would you be willing to share the doctor who treated your condition?

    reply
    • ColEugene
      ColEugene  April 1, 2015

      Kendell: First my Board Certified Neurologist who has helped me since 2004 is Waden Emery III, Neuromuscular Neurologist who is in Lighthouse Point, FL. He is the Medical Advisor for our website and work for patients. Lighthouse Point is about 1 hour north of Ft Lauderdale Airport on Federal Highway (Route 1) north of Sample Road, 5340 N. Federal Hwy, Suite 205. His phone number is 954 771 8300. If you do visit him, tell him that Col Richardson sent you. However, if I knew where you live, I might be able to find a good one who works with Neuropathy Patients nearer to where you live. Just let me know where you live. Examples: Good ones in New York City; Nashville, TN; Philadelphia, PA; Detroit, MI; Rochester, MN; Cleveland, OH; Scottsdale, AZ; AND many other locations within the U.S and other countries. Just let me know where you live!

      reply
      • ColEugene
        ColEugene  April 1, 2015

        Kendell: I forgot to tell you that the Neuropathy Support Network is in the process of finding and listing doctors on our website, but we are still working on it. We are trying to find the ones who are really involved and hold the necessary respect for neuropathy patients, but then of course you never know until a patient visits with them. Gene

        reply

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