Celebs With Neuropathy Hard To Find

Finding well-known people who also have neuropathy is like searching for the proverbial needle in the haystack. Today's extract from a neurocentre.com (see link below) page shows two people who may be better known to Brits than elsewhere in the world. Norman Wisdom was a famous comic actor (incredibly popular in Albania of all places) and  Warren Mitchell played the notorious Alf Garnett in the 70's (way too politically incorrect for 2012 but funny at the time). They have given their support over the years to the Neuropathy Trust. Unfortunately Sir Norman Wisdom has now died and we could really do with a few more celebrity role-models, so if you know of anyone, please let us know. That organisation is a very well known independent neuropathy charity that operates across the world.

What is the Neuropathy Trust?

The Neuropathy Trust is a worldwide Charity (1071228) that was founded in 1998 by Andrew Keen to provide a lifeline to people affected by Peripheral Neuropathy (PN) and Neuropathic Pain (NeP). It is the primary function of the Trust to ensure, irrespective of the cause of the peripheral neuropathy or neuropathic pain (whether known or otherwise) that patients, family, carers and health care providers receive the highest possible level of information and support. The Neuropathy Trust is independent of any government, political ideology, economic interest or religionWell Known Supporters

Warren Mitchell

“About twenty years ago a virus attacked the nerves in my spine, leaving me temporarily paralysed from the waist down. I was working on a film in Australia at that time and, although I discharged myself from hospital in order to carry on working, those were some of the toughest days in my life. Although I couldn’t stand or move around during a scene, for example, the film-crew propped me up and gave me every help so that we could carry on filming. Afterwards I went back to hospital in Sydney and had lots of physiotherapy for two weeks. I was very fortunate because I was soon walking again and within six weeks I was tap dancing on another film set. I have, however, been left with residual neurological effects which do trouble me greatly. My feet, for example, really do feel as if they are sometimes going to explode; at times they are burning and other times freezing cold. I also have strange tingly sensations in my legs and a degree of spasticity because my nervous system has been damaged permanently. After my article appeared in the paper the Neuropathy Trust sent me some information and I know there are lots of you out there who are in a far worse condition than myself. I am lucky that my dear wife Connie is so supportive and allows me one self-pitying moan per week. It is reassuring to know that doctors and scientists the world over are now working hard, trying to find ways to overcome the damage to nervous systems and relieve the pain which can affect the quality of life so much. I wish them all well in their research.”

Previous Patrons
Sir Norman Joseph Wisdom, OBE (4 February 1915 – 4 October 2010) RIP Old Chum!

“When I was approached to become Patron of the Neuropathy Trust, I was delighted to offer my support and endorsement to such a worthy cause. What has impressed me the most about this organisation is the positive and encouraging manner in which it is tackling the huge task that it has undertaken.
The Trust, which has been founded upon the motto ‘Carpe Diem’ (Seize the Day), is proving to be a tremendous source of comfort and inspiration to many thousands of people affected by Peripheral Neuropathy and associated neuropathic conditions. It is bringing together people from all over the world, offering hope and a sense of purpose and worth to families, friends and carers. It is helping to bridge communications between patients and the medical profession, for the benefit of all concerned.
This important work must be encouraged and sustained and I would urge you to join in with me in supporting this charity.”

http://neurocentre.com/community/?page_id=2

Neuropathy And Your Quality Of Life

Today's post from neuropathydr.com (see link below) talks about the quality of a person's life when they have neuropathic problems to deal with. Most doctors will only look at the physical aspects of neuropathy and only evaluate what can be proved scientifically (they may only have a limited time to do that) but the psychological effects and the effects on your quality of life are just as important. It's a no-brainer; a happier person will react better to treatment.
The article forms part of a large website promoting medical clinics but the information is well-sourced ,accurate and very helpful. Following the link to the original page will allow you to contact them if you wish.

Peripheral Neuropathy and Your Quality of Life

If you’re suffering from peripheral neuropathy, you know how much it affects your life.

Every single day…

Even the simplest tasks can be difficult if not impossible…

To anyone unfamiliar with peripheral neuropathy and its symptoms, they might just think “your nerves hurt a little…”

But at a peripheral neuropathy sufferer, you know better…

Peripheral neuropathy not only affects your health, it can wreck your quality of life.

How Do You Define Quality of Life?
Generally speaking, Quality of Life is a term used to measure a person’s overall well-being. In medical terms, it usually means how well a patient has adapted to a medical condition. It measures[1]:

• Your physical and material well being
• Your social relationships – how you interact with others
• Your social activities
• Your personal fulfillment – your career, any creative outlets you may have, how involved you are with other interests)
• Your recreational activities – your hobbies, sports, etc.
• Your actual health – what your health is really like and how healthy you believe you are

How do you feel about these aspects of your life? Your attitude and approach to your illness, both your neuropathy and the underlying cause of your neuropathy (i.e., diabetes, HIV/AIDS, lupus, etc.) can make a huge difference in how well you adapt to your neuropathy symptoms.
Neuropathy Symptoms Aren’t Just Physical
The pain of peripheral neuropathy falls into the category of what is considered chronic pain. It usually doesn’t just come and go. You can’t just pop a couple of aspirin and forget about it. It’s pain with its root cause in nerve damage.
The nerves that actually register pain are the actual cause of the pain. When you’re in that kind of pain on a consistent basis, it affects you in many different ways[2]:

• You become depressed and/or anxious
• Your productivity and interest at work is disrupted
• You can’t sleep
• It’s difficult for you to get out and interact with other people so you feel isolated
• You sometimes don’t understand why you’re not getting better

What You Can Do To Improve Your Quality of Life
You may feel like your situation is hopeless, especially if you’ve become mired in depression.
But it isn’t.
There are things you can do to lessen the physical (and emotional) effects of peripheral neuropathy and help you function as normally as possible:

• Pay special attention to caring for your feet. Inspect them daily for cuts, pressure spots, blisters or calluses (use a mirror to look at the bottom of your feet). The minute you notice anything out of the ordinary, call your doctor or your local NeuropathyDR® clinician for help. Never go barefoot – anywhere.
• Treat yourself to a good foot massage to improve your circulation and reduce pain. Check with your insurance company – if massage is actually prescribed by your doctor, they may cover some of the cost.
• Only wear shoes that are padded, supportive and comfortable and never wear tight socks.
• If you smoke, quit. Nicotine decreases circulation and if you’re a peripheral neuropathy patient, you can’t risk that.
• Cut back on your caffeine intake. Several studies have found that caffeine may actually make neuropathy pain worse.
• If you sit at a desk, never cross your knees or lean on your elbows. The pressure will only make your nerve damage worse.
• Be really careful when using hot water. Your peripheral neuropathy may affect the way you register changes in temperature and it’s really easy for you to burn yourself and not even realize it.
• Use a “bed cradle” to keep your sheets away from your feet if you experience pain when trying to sleep. That will help you rest.
• Try to be as active as possible. Moderate exercise is great for circulation and it can work wonders for your emotional and mental health.
• Make your home as injury proof as possible – install bath assists and/or hand rails and never leave anything on the floor that you can trip over.
• Eat a healthy, balanced diet. If you don’t know what you should and shouldn’t eat, talk to your NeuropathyDR® clinician about a personalized diet plan to maintain proper weight and give your body what it needs to heal.
• Try to get out as often as possible to socialize with others.

We hope this information helps you to better manage your peripheral neuropathy symptoms. Take a look at the list above and see how many of these things you’re already doing to help yourself. Then talk to your local NeuropathyDR® clinician about help with adding the others to your daily life.

http://neuropathydr.com/blog/general-information-on-nd-protocols/peripheral-neuropathy-and-your-quality-of-life-2/

Trauma Insurance For Neuropathy

Today's interesting post from lifeinsurancefinder.com.au (see link below) talks about the possibility of being covered by a trauma insurance in the event of contracting neuropathy. I've certainly never heard of such an insurance in the Netherlands and because it's an Australian article, it's possible that it only applies in certain countries. Whatever the range, this sort of insurance policy seems to be a very good thing for neuropathy sufferers although I assume that you couldn't take the insurance out retrospectively. It will be an insurance meant to cover future events and not if you're already suffering.
Many people may be able to take out insurances to cover loss of work through unpredicted illness but this may be something different. Certainly an interesting idea.

Peripheral neuropathy

Last Updated January 21st, 2011 by Life Insurance Finder

The Australian Bureau of Statistics (ABS) released data in 2008 that indicated two in three men and one in three women are likely to suffer a traumatic event during their working lifetime. One of the many traumatic events they included in their survey was peripheral neuropathy. The odds of two in three men or one in three women is not good and for this reason life insurance companies offer financial protection in the way of trauma insurance.

Peripheral neuropathy is the occasioning of damage to the peripheral nervous system, the manner in which information is transmitted from the brain and spinal cord to every other part of the body. In fact there are more than 100 types of peripheral neuropathy that have been discovered within the human body, each one with its own characteristic set of symptoms, development and prognosis.

Life insurance companies, through their trauma insurance, are helping sufferers to cope with this debilitating disease that is becoming more endemic in the community because of it close link to diabetes which has grown prolifically in recent years in western countries. This assistance is by the way of a lump sum payment on a positive diagnosis of the condition. This money can then be used to pay off existing debts, mortgage repayments etc. so the sufferer has at least one less problem to worry about.

Some sufferers may experience temporary numbness, pricking or tingling sensations, sensitivity to touch, or muscle weakness. Others may suffer more extreme symptoms, organ or gland dysfunction, paralysis, muscle wasting, or burning pains at night, as the impaired function and symptoms depend on the type of nerves affected – autonomic, sensory or motor.
There are two ways in which peripheral neuropathy can be contracted, either by inheritance or acquisition:

• Sufferers who have inherited the disease have done so through either inborn mistakes in the genetic code or by new genetic mutations, for which there is no cure.
• Acquired peripheral neuropathy can result because of a physical injury to a nerve, tumours, toxins, autoimmune responses, nutritional deficiencies, alcoholism and vascular and metabolic disorders. This often comes about because of systemic disease, autoimmune disorders affecting nerve tissue, infections, or from trauma brought about by some external agent.

Acquired peripheral neuropathy can be treated in many ways such as:

• Adopting healthy habits.
• Avoid exposure to toxins.
• Following a doctor supervised exercise program.
• Eating a balanced diet.
• Correcting vitamin deficiencies.
• Limit alcohol consumption.

All these actions can help reduce the emotional and physical effects of peripheral neuropathy as trauma insurance offered by life insurance companies can reduce the financial effects. Systemic diseases often require much more complex treatments.

In acute neuropathies, such as Guillain-Barr syndrome, the symptoms suddenly appear and develop fast, they also tend to resolve slowly as the damaged nerves heal following successful treatment. In its chronic form the symptoms appear subtly and develop slowly. Many sufferers occasion periods of relief only to be followed by a relapse. Others may get to a certain level where the symptoms remain static without change for many months, even years. Some worsen over time but very few prove to be fatal unless complicated by other illnesses. Occasionally peripheral neuropathy is a symptom of another disorder.
Since each life insurance company defines trauma insurance conditions differently it is very important to closely read the policy conditions and definitions before making any final decision to take out the cover. This early caution may save you a lot of emotional stress in the event of you making a claim in later years.

Most life insurance companies offer trauma insurance to people between 17 and 59 years of age and allow it to be renewed until the policy anniversary date prior to the insured’s 80th birthday, although it is important to keep in mind that after the insured person reaches the age of 70 years, the cover often reduces automatically to that of ‘Loss of independent Existence’. Trauma cover benefits are paid in a lump sum if the insured survives for 14 days following the occurrence of many specified major medical conditions outlined in the policy document and the cover is available as part of the life insurance policy or as a standalone cover.

The amount of trauma insurance you need to take out is purely a personal individual decision you yourself will have to determine. In making this decision you should consider your cost of living expenses and any medical costs that may be associated with your illness including any rehabilitation expenses. In short your insurance cover should be sufficient to pay off all your debts so you can concentrate on getting well again without having to worry about your finances.

http://www.lifeinsurancefinder.com.au/diseases-and-health-conditions/peripheral-neuropathy/

Neuropathy, A General Guide

As is usual on this blog, every now and then, a new post will appear which gives a different general picture of what neuropathy is and how it's normally treated. These posts are for newcomers to the blog, or people who have just been diagnosed with the condition, or people who want to understand exactly what's happening to them. People who have had neuropathy for a long time, will probably be aware of most of the facts shown here but it doesn't do any harm to refresh your knowledge now and again. I always learn something new whenever I read one of these articles because every source comes at it from a slightly different angle. Today's post is from weillcornell.org (see link below) a medical college and is an excellent introduction to the disease.

Neuropathy

The nervous system is made up of two parts. The core is your central nervous system — your brain and spinal cord. The rest of your nervous system, branching off from your spinal cord to the rest of your body, is your peripheral nervous system.

Neuropathy is a disorder that prevents nerves from functioning properly. It can cause paralysis if a nerve is completely lacerated, although total paralysis is rare in people with neuropathy. Rather, the disease causes varying degrees of weakness, depending on the type and severity of the neuropathy.

• Peripheral neuropathy involves damage to the peripheral nerves that transmit pain and temperature sensations, and can prevent people from sensing that they have been injured from a cut or that a wound is becoming infected. Pain receptors in the skin can also become over-sensitized, so that people may feel severe pain from stimuli that are normally painless (for example, some may experience pain from bed sheets draped lightly over the body).
• Autonomic neuropathy is damage to the nerves that regulate the part of your nervous system that you can't control — the nerves that regulate your heart rate, blood pressure, perspiration and digestion, among other functions. Your nerves transmit messages between your brain and your muscles, blood vessels, skin and internal organs. Damage to your autonomic nerves results in faulty communication between your brain and the parts of your body that your autonomic nervous system serves. People may not detect pains that warn of impending heart attack or other acute conditions. Autonomic nerve dysfunction can become life threatening and may require emergency medical care in cases when breathing becomes impaired or when the heart begins beating irregularly.

Causes

Peripheral neuropathy can result from

• diabetes
• nerve compression or entrapment
• trauma
• penetrating injuries
• fracture or dislocated bones
• tumor
• intraneural hemorrhage
• exposure to cold or radiation
• rarely, certain medicines or toxic substances
• vascular or collagen disorders such as atherosclerosis, lupus, scleroderma, sarcoidosis, and rheumatoid arthritis.

In some cases, neuropathy is caused by heredity, vitamin deficiency, infection, and kidney disease.Symptoms

Peripheral neuropathy produces symptoms such as weakness, muscle cramps, twitching, pain, numbness, burning, and tingling (often in the feet and hands). Symptoms are related to the type of affected nerve and may be seen over a period of days, weeks, or years. Neuropathic pain is difficult to control and can seriously affect emotional well-being and overall quality of life. Neuropathic pain is often worse at night, seriously disrupting sleep and adding to the emotional burden of sensory nerve damage.

• Motor nerve damage causes muscle weakness, and symptoms may include painful cramps and muscle twitching, muscle loss, bone degeneration, and changes in the skin, hair, and nails.
• Sensory nerve damage may result in a general sense of numbness, especially in the hands and feet. People may feel as if they are wearing gloves and stockings even when they are not. Damage to these fibers may cause people to become insensitive to injury from a cut or that a wound is becoming infected. Others may not detect pains that warn of impending heart attack or other acute conditions. Pain receptors in the skin can also become oversensitized, so that people may feel severe pain from stimuli that are normally painless (for example, some may experience pain from bed sheets draped lightly over the body).

Symptoms of autonomic nerve damage are diverse and depend upon which organs or glands are affected. Common symptoms include:

• An inability to sweat normally, which may lead to heat intolerance
• A loss of bladder control, which may cause infection or incontinence and
• An inability to control muscles that expand or contract blood vessels to maintain safe blood pressure levels. A loss of control over blood pressure can cause dizziness, lightheadedness, or even fainting when a person moves suddenly from a seated to a standing position (a condition known as postural or orthostatic hypotension).
• Gastrointestinal symptoms frequently accompany autonomic neuropathy. Nerves controlling intestinal muscle contractions often malfunction, leading to diarrhea, constipation, or incontinence. Many people also have problems eating or swallowing if certain autonomic nerves are affected.

Diagnosis

Neuropathy can be a difficult condition to diagnose. To begin, your doctor will take a full medical history and perform a physical and neurologic exam that may include checking your

• tendon reflexes
• muscle strength and tone
• ability to feel certain sensations, and
• posture and coordination

Your doctor also may request one or more of the following:

• blood tests to check your level of vitamin B-12
• a urinalysis
• thyroid function tests and, often
• electromyography (EMG) — a test that measures the electrical discharges produced in your muscles
• a nerve conduction study, which measures how quickly your nerves carry electrical signals. A nerve conduction study is often used to diagnose carpal tunnel syndrome and other peripheral nerve disorders
• Your doctor may recommend a nerve biopsy, a procedure in which a small portion of a nerve is removed and examined for abnormalities. But even a nerve biopsy may not always reveal what's damaging your nerves

Treatment

Neuropathy does not usually clear up unless the problem causing neuropathy is treated or removed. Controlling a chronic condition may not eliminate your neuropathy, but it can play a key role in managing it.
Depending on the cause, neuropathy may be relieved by medications, vitamin supplements, physical or occupational therapy, splinting, or surgery. Here's what your doctor may recommend for treating various underlying conditions:

• Diabetes. If you have diabetes, you and your doctor can work together to keep your blood sugar level as close to normal as possible. Maintaining normal blood sugar levels helps protect your nerves.
• Vitamin deficiency. If your neuropathy is the result of a vitamin deficiency, your doctor may recommend injections of vitamin B-12 daily for a few days, then once a month. If you have pernicious anemia, you'll need regular injections for the rest of your life, and possibly additional vitamin supplements.
• Autoimmune disorder. If caused by an inflammatory or autoimmune process, your neuropathy treatment will be aimed at modulating your immune response.
• Nerve pressure. Treatment will likely focus on adding ergonomic chairs, desks or keyboards to your home or office, changing the way you hold tools or instruments, or taking a break from certain hobbies or sports. Only in extreme cases of nerve compression will you need surgery to correct the problem.
• Toxic substances or medications. If toxins or medications are responsible for the neuropathy, it's critical that you avoid further exposure to the toxin.

Medications

Medications can ease pain symptoms, but most have side effects, especially if you take them for long periods of time. If you take pain medication regularly, including over-the-counter products, discuss the benefits and side effects with your doctor. Medications that may help provide pain relief for neuropathy include:

• Pain relievers
• Anti-seizure medications
• Lidocaine patch
• Tricyclic antidepressants
• Other medications, including opioid analgesics; mexiletine (Mexitil), or the topical ointment capsaicin may help ease the pain of diabetic neuropathy

Drug-free therapies

Several complementary or alternative therapies and techniques may also help with pain relief. They include:

• Hypnosis
• Acupuncture
• Biofeedback
• Relaxation techniques, including deep-breathing exercises, visualization, yoga and meditation
• Transcutaneous electrical nerve stimulation (TENS), a safe, painless therapy using tiny electrical impulses to help block pain signals

Research

Research aimed at finding more effective treatments for peripheral neuropathy is ongoing. For example, researchers are looking at developing nerve growth factors to reproduce the chemicals that signal your body to repair small nerve fibers. Other scientists are studying the use of the antioxidant alpha lipoic acid (thioctic acid) to treat diabetic neuropathy. Unfortunately, no medications can repair nerve damage yet, but the body can regenerate nerves if the offending substance is removed.

http://www.weillcornell.org/health/neuropathy.html

Footwear For Peripheral Neuropathy

Today's post comes from shoes.lovetoknow.com (see link below) and talks about footware that is suitable for people suffering from neuropathy. Unfortunately, it makes reference to American shops and brands only and the reader will need to find comparable shoe makes and styles in their own region. What the article does do is highlight the importance of having footware that is sympathetic to your condition and will give you the support you need. We all know how easy it is to stumble and fall with neuropathy - we either feel too little or too much and the signals to the brain are confused when we're walking. It's vitally important to have the best and most comfortable shoe support we can afford to minimise the risk of trips, falls and general discomfort.
All brands and links to brands and shops can be followed by going to the original site page (see link below).

Peripheral Neuropathy Footwear

By Danielle Jennings Reviewed by Terri Forehand RN

Advances in peripheral neuropathy footwear are doing a lot to help ease some of the discomfort associated with this condition. There are many stores that specialize in comfort footwear today, and modern assistive shoes often don't even look like traditional orthopedic styles, allowing a variety of choices that still meet your needs.

The Need for Peripheral Neuropathy Footwear

According to PubMed Health, peripheral neuropathy indicates the progressive muscle weakness in the feet, lower legs, hands and forearms. There will also be some loss of sensation in the toes, feet and fingers. This is what makes the disease so dangerous, and diabetics or AIDS sufferers so prone to the need for amputation - when the neuropathy is advanced, you can't feel when you are putting too much pressure on the foot. That can create an ulcer, but the diabetic will not feel the pain, thus worsening the condition. When diabetes or AIDS are present, you have to be acutely proactive about your body and assess your feet regularly for signs of distress.

What They Should Provide

As you embark on your search for the proper footwear that will be equally comfortable and appropriate for your condition, there are a few style characteristics you should look for to make things easier.

• Wearing the right shoes helps a great deal. Look for shoes that accommodate swelling, are seamless, soft and supportive and allow for custom inserts, should that extra support be necessary.
• If you don't yet need specific peripheral neuropathy footwear, you still must wear the right shoes for your condition and to ensure that no other complications arise.
• Choose have shoes with a high, wide toe box (you must be able to wiggle your toes), soles designed to reduce pressure on the ball of the foot, and firm heel counters.
• Orthopedic shoes are often designed with Plastazote, a foam that can accommodate pressure by conforming to heat. It customizes to the foot, thus giving extra protection, although of course you should still be checking your feet for any irregularities.

Choices in Protective Footwear

The good news is that if your peripheral neuropathy is caught early, you can continue to wear non-orthotic shoes so long as you maintain good foot health. Shoes by reputable designers such as Crocs, Eneslow, New Balance, Pedors and Hush Puppies will all be supportive and are made to fit a foot exactly. You can also consult with your doctor as to other shoes you might be interested in.

Fortunately, there are more stores for this foot condition than in the past, making shopping convenient and thorough. Take a look at a few standouts:

Eneslow

When you need something a bit more custom designed for your foot problems, try specialized shops such as Eneslow. They have storefronts but you can also shop online and contact them with particular needs. In addition to selling inserts and assistive devices, they can custom-make shoes to order. If you're someone who's been a real shoe-lover, this can be a great way to get something that is still expressive but takes care of your feet. They also have a list of suggested footwear for diabetic feet available at their store.

Pedors

Pedors has orthopedic shoes for men, women and children. Most of them do look like orthopedics, but the classic Mary Janes manage to be fairly innocuous, and there are clogs and loafers that won't attract negative attention.

Healthy Shoe Store

The Healthy Shoe Store has shoes designed for those that suffer from a myriad of foot and leg conditions. They have a nice selection of New Balance and Aetrex sneakers as well as Orthofeet and Comfortrite shoes. They also stock several types of shoes insoles and foot supports, which provide overall shoe comfort and stability for sufferers of peripheral neuropathy. The shoes they offer are mostly in neutral colors like black, white and tan. The shoes at the Healthy Shoe Store are also a little pricier, as the most expensive style is around $230

FootSmart

FootSmart is a store that is focused on comfort footwear for a variety of conditions. They offer men's and women's styles from narrow to extra wide. They offer dozens of styles in athletic, casual, and dress footwear for diabetic neuropathy. Brands such as Orthofeet, Propet, and New Balance are available.

Drew Shoes

Drew Shoes is also focused on comfort footwear, and you can shop men's and women's styles according to condition. The store carries the seal of the Pedorthic Footwear Assocation. They carry therapeutic shoes that contain Medical Heel Stabilizers, wide steel shanks and polyurethane slip-resistant outsoles. There are several styles for those with diabetes and other foot afflictions such as: Tulip, Orchid, Victor, Journey, Lotus, Victoria and Blazer.

Appropriate Shoe Styles

If you're still a little unsure about what types of shoes are best, here are a few styles that can be found at most department stores and online shopping sites:

• Hush Puppies Power Walker - Popular walking shoes that feature moisture-wicking Dri-lex linings, removable molded footbed and patented Bounce technology for maximum comfort and shock absorption.
• Crocs Ultimate Cloud - Designed specifically for the diabetic foot, this shoe offers supreme comfort, toecap and heel cup for added protection, enhanced arch support, and ventilation to keep feet cool and dry.
• New Balance WX623 - A diabetic sneaker that provides superior shock absorption and Comfort collar features anatomically positioned foam pads that lock-in the heel and cushion around the ankle.

Styles Have Changed

Overall, selections for shoes designed to support troubled feet have improved dramatically, better guaranteeing that, though you have peripheral neuropathy, you don't have to suffer. Once you find a select style or brand that you like, you'll soon realize that it's not such an inconvenience after all.

http://shoes.lovetoknow.com/Peripheral_Neuropathy_Footwear 

A Massage Therapist's View of Neuropathy

Today's post from massagetoday.com (see link below) gives a very good general explanation of what neuropathy is and the main reasons why it occurs. It is written from a slightly different angle to most general posts about neuropathy, in that it is written by a massage therapist who has a lot of experience of helping neuropathy patients. It is refreshing to read that she admits that the neuropathy patients with the most to gain from massage treatment are those where the cause is mainly due to either compressed nerves or physical trauma. Worth bearing in mind if you're considering spending money on massage therapy. That said, anything that helps you to avoid muscle spasms and muscular inflammation around your neuropathy regions, will probably benefit you as a matter of course. Nerve pain can cause such tension in other tissues and muscles that massage treatment may well be one of the most helpful non-medication treatments. You may find the links in the original article worth following.

Treatment Decisions for Peripheral Neuropathy

By Rita Woods, LMT: Massage Today April, 2012, Vol. 12, Issue 04

My last two articles on peripheral neuropathy (in the October 2011 and February 2012 issues of Massage Today) prompted several positive comments and treatment questions. 

The focus was diabetic-induced peripheral neuropathy and chemotherapy-induced peripheral neuropathy for which I included a massage therapy protocol for treatment from the book, Step By Step Massage Therapy Protocols for Common Conditions. Here, I will broaden the list of conditions and causes of other peripheral neuropathies so you can better understand your clients condition and create a treatment plan accordingly.

First, the physiology and chain of events involved in a glucose-related neuropathy, as with diabetes, is more clearly understood than in some other neuropathies. This makes it easy to see how and why the protocol can be effective. Second, we know from experience that chemotherapy-induced peripheral neuropathy responds well to the massage protocol and is used today in some oncology massage clinics. Both of these conditions require that the underlying cause be eliminated for complete recovery. The glucose levels must be stable to prevent further damage and the chemotherapy must be completed or changed to achieve optimal results. Our work is to return the tissue back to normal (as much as is possible) through increased circulation and the condition will improve or go away. Peripheral neuropathies (PN) come with a variety of causes and in some cases, the cause is not known. Let's take a look at some of them.

About 30% of all PNs are a direct result of diabetes. Another 30% are considered idiopathic, meaning the cause is unknown. The rest fall into several groups and are either acquired (most of them are) or inherited. Presently, there are more than 100 known causes of peripheral neuropathy. The Mayo Clinic provides this list of known causes:

• Exposure to poisons. These may include some toxic substances, such as heavy metals, and certain medications — especially those used to treat cancer (chemotherapy).
• Infections. Certain viral or bacterial infections can cause peripheral neuropathy, including Lyme disease, shingles (varicella-zoster), Epstein-Barr, hepatitis C and HIV/AIDS.
• Inherited disorders. Examples include Charcot-Marie-Tooth disease and amyloid polyneuropathy.
• Trauma or pressure on the nerve. Traumas, such as motor vehicle accidents, falls or sports injuries, can sever or damage peripheral nerves. Nerve pressure can result from using a cast or crutches, spending a long time in an unnatural position or repeating a motion many times — such as typing.
• Tumors. Growths can form directly on the nerves themselves, or tumors can exert pressure on surrounding nerves. Both cancerous (malignant) and noncancerous (benign) tumors can contribute to peripheral neuropathy.
• Vitamin deficiencies. B vitamins — B-1, B-6 and B-12 — are particularly important to nerve health. Vitamin E and niacin also are crucial to nerve health.
• Other diseases. Kidney disease, liver disease and an underactive thyroid (hypothyroidism) also can cause peripheral neuropathy.

What I found missing from this list was that some medications are known to cause PN in some patients. In particular are the statins – cholesterol lowering drugs. This prompts me to remind you to get a complete medical history that includes a list of medication. Drugs are easy to look up online in order to identify possible side effects. (Please review two articles on this subject, "Chasing the Pain" from the October 2010 and February 2011 issues of Massage Today). To see how this happens, let's remember that a nerve is surrounded by a myelin sheath. Myelin is an insulating layer that forms around nerves and is made up of protein and fatty substances including cholesterol. The purpose of the myelin sheath is to allow impulses to transmit quickly and efficiently along the nerve cells. If myelin is damaged, for whatever reason, the impulses slow down or send imperfect signals that can be interrupted as pain. Stain drugs are developed to reduce cholesterol and in some patients, it prevents the myelin sheath from repairing itself. This reduces its ability to protect the nerve resulting in pain, tingling and numbness of the nerves. This can also affect nerves to internal organs. Do you see how our ability to help that client may be limited because the neuropathy is caused by nerve damage and is not the result of blocked or impaired circulation?

The neuropathies caused by physical trauma or pressure on nerves is really our area of expertise and an area in which can have a positive impact on the client. Repetitive stress often leads to entrapment neuropathies, a special category of compression injury. Cumulative damage can result from repetitive, forceful, awkward activities that require flexing of any group of joints for prolonged periods. The resulting irritation may cause ligaments, tendons and muscles to become inflamed and swollen, constricting the narrow passageways through which some nerves pass. Carpal tunnel syndrome is a good example of this kind of neuropathy. Remember to think it through. If the underlying cause falls within our scope of practice, then you may be able to have a positive outcome. If not, give what supportive care you can but be careful not to give false hope to the client. Help them to understand their condition and develop a treatment plan that you will both be happy with.

http://www.massagetoday.com/mpacms/mt/article.php?id=14567

Is An MRI An Appropriate Test For Neuropathy?

Today's post from painmedicinenews.com (see link below) talks about the ongoing doubt amongst medical experts as to what the best form of testing for neuropathy actually is. The high incidence of MRI testing, especially in North America, is intended to rule out other potential problems, rather than to establish neuropathy (which it can't really do). This stems from the fact that doctors are frequently doubtful that they're dealing with a neuropathy problem and want to make sure they're not missing anything else. Considering the high cost of MRIs, this does seem a little wasteful when other tests and the patient's own accounts can be far more accurate indicators of neuropathic problems.

High Rate of MRI Found in Study of Peripheral Neuropathy Diagnosis

But analysis did not examine whether imaging was appropriate or not.

ISSUE: APRIL 2012 by Rosemary Frei, MSc

With more than one dozen diagnostic tools, identifying peripheral neuropathy (PN) can be complex and costly. That is why investigators at the University of Michigan attempted to define diagnostic practice patterns in order to identify opportunities to improve efficiency of PN care.

The researchers identified 1,031 individuals diagnosed with PN between 1996 and 2007 through the Health and Retirement Study and the linked Medicare Standard Analytical Files (Ann Intern Med 2011;172:127-132). They included patients who were at least 65 years old in 1996, and created a matched comparison group. Among the subjects, 41.5% had diabetes and 44.4% of these had diabetic neuropathy; 80% of the nondiabetic individuals had idiopathic neuropathy.

The researchers focused on 15 relevant tests for PN to determine the number and patterns of tests used six months before and after the incident neuropathy diagnosis. After assessing 15 PN diagnosis tests, the investigators found that four were performed most often, on average, but testing patterns were highly variable, with more than 400 different patterns identified. The most common testing pattern was used only in 4.8% of patients.

About one-fourth—23.2%—had at least one magnetic resonance imaging (MRI) of the brain or spine, whereas a glucose tolerance test was rarely obtained (1%). Almost one-fifth (19.8%) of patients with neuropathy received electromyography. A complete blood cell count was ordered in 73.1% of patients, thyrotropin level in 55.2%, comprehensive metabolic panel in 53.2%, erythrocyte sedimentation rate in 28.7% and an antinuclear antibody test in 11.2%.

Additionally, a fasting glucose level test was ordered in 23.4% of patients with neuropathy. A hemoglobin A_1c level was ordered in 43.2% of those with neuropathy and 17.1% of nondiabetic patients. Vitamin B₁₂ levels were ordered in 32.6% of patients with neuropathy and in 40.6% of nondiabetic patients.
The large number of tests translated into high levels of Medicare expenses during the diagnostic period, at $14,362 per patient per year.

“High MRI use is probably for many reasons including physicians not being confident that someone has PN, the fact that no cause is identified for many cases with neuropathy, which pushes physicians to order more tests and because patients often prefer more testing, especially MRIs,” said Brian Callaghan, MD, assistant professor of neurology at University of Michigan Medical School, Ann Arbor.

The team concluded that more research is needed on the optimal approach for diagnosing PN. “First, I think we need to firmly establish what the best tests are for the evaluation of this condition. Next, we need to increase awareness among physicians including internists and neurologists that see this common condition,” said Dr. Callaghan.

Despite the high use of MRI, the evidence indicates two-hour oral glucose tolerance, fasting glucose, vitamin B₁₂ levels and serum protein electrophoresis provide the highest true-positive rate and the greatest potential for guiding subsequent interventions (Neurology 2009;72:185-192).

Vera Bril, MD, suggested that the high use of MRI likely is linked to testing for comorbid conditions, rather than for PN itself. “You need to know why the physicians ordered the MRIs; it’s a leap to assume it’s inappropriate,” said Dr. Bril, professor of neurology at the University of Toronto and head of neurology at the University Health Network and Mount Sinai Hospital, Toronto, Canada.
“The patients in my clinic of this age often have spinal degenerative disease in addition to PN. I don’t do MRIs in my straightforward PN patients, but if they have spinal involvement. I’ll look further at it, including possibly with MRI.”

http://www.painmedicinenews.com/ViewArticle.aspx?d=Clinical%2bPain%2bMedicine&d_id=82&i=April+2012&i_id=826&a_id=20593

Infectious Neuropathy Makes Diagnosis Difficult

Today's post from utahfootdoc.com (see link below) is written by Brandt Gibson, a well-known doctor specialising in neuropathic problems. He raises very important points when it comes to diagnosing neuropathy in people living with HIV. In short, nothing should be taken for granted. The cause of someone's neuropathy may not be as obvious as it seems and careful investigation is necessary. Assuming that the cause is HIV-related may rule out other possible causes like vitamin deficiency, diabetes and other reasons; all of which HIV patients are quite capable of getting and all of which are treatable in different ways.

Infectious Peripheral Neuropathy A Valid Cause...

Brandt R Gibson, DPM

HIV and AIDS are commonly discussed as possible causes of peripheral neuropathy, but are these the only infective causes? The truth is that multiple infections have been linked to neuropathy including HIV/AIDS, Lyme Disease, Shingles and Septicemia. Although other infections may cause a neuropathy, these are the most common causes noted in the literature.

The great news about these causes of peripheral neuropathy is that if the infection can be improved or resolved, the neuropathy usually follows suit. Resolving a septiciemia will resolve the neuropathy. Therefore, any patient with peripheral neuropathy should be evaluated to determine if infection may be the cause or partial cause of the encountered neuropathy. That information may provide a simple method to improve or resolve the neuropathy.

In cases like HIV, where resolution is not currently possible, other causes of peripheral neuropathy should also be considered. I have long advocated that neuropathy and diabetes in the same patient doesn't mean one is the cause of the other. This is also true for HIV. All possible causes should be evaluated and treated if possible, because that will possibly provide additional treatment options.

We are seeing improvement and resolution of neuropathy in patients, but only when a cause is determined and treated. Infectious neuropathy is another possible cause that must be considered.

http://www.utahfootdoc.com/blog/infectious-peripheral-neuropathy-a-valid-cause.cfm

Understanding Your Neuropathy Doctors

Today's post written by a well-known name on  neuropathy websites, LtCol Eugene B Richardson, (see link below) is a longer one but well-worth reading because it looks at the relationship between doctor and patient in cases of neuropathy. It is one of those diseases where both patient and doctor can easily build up frustrations, both because of the difficulty in finding causes and the even greater difficulty in finding effective treatments. Doctors can frequently seem dismissive or even uncaring and patients may come over as 'demanding' and difficult as they seek for answers. Really the responsibility lies with the doctor, to be as informed as possible but also reassuring and sympathetic to the patient's symptoms but the patient must play a role as well. If you do as much research as possible beforehand, you can both get down to the nitty gritty of your case, without the doctor having to use up all the appointment time in explaining the basics. If he or she, understands that you know a little bit about what he/she is talking about, you're more likely to create a dialogue and less likely to be issued a prescription for the first thing on his neuropathy drug list. Patience and tact are required on both sides but equally, you certainly have the right to be taken seriously!

Doctor/Patient Relationships: Unlocking Doors

Posted April 19th, 2012 by LtCol Eugene B Richardson, USA (Retired) BA, MDiv, EdM, MS

Note: This article is from a teleconference presentation given for The Pacific Chapter of The Neuropathy Association, Inc., in April 2012
Our topic today is “Doctor-Patient Relationships: Unlocking Doors” and by understanding important elements of that relationship, patients can participate in unlocking barriers which too often prevent patients from getting the most out of visits to a medical professional.

THE CURSE OF DOCTORS:

There is a book about a double amputee’s awesome ten year battle against continuous pain titled, Whole Again by Lee Whipple, the father of the double amputee.

One of the GREATEST discoveries of the father and his son was, “What a doctor is and what a doctor is not!” It sounds simple and obvious, but it is neither. On page 182 of the book, referring to the attitude of some doctors who enjoy playing the all-knowing miracle man role, he speaks of a conversation in which:

“…doctors are bemoaning the way the American Medical Association and the media portrays doctors as “miracle men” – an image they felt no one could live up to. Modern medical technology did seem – in many instances, a miracle, but it was not always available; sometimes only a handful of doctors understood or could implement it. And there were numerous areas of medical practice advancing only very slowly. This point struck home….and there were politicians like doctors, who fostered the miracle-man image, just as there were those in both professions who fought against it….a new perception of doctors, neither black nor white but gray, was forming. The new information had transformed his thinking: doctors were both better and worse than he had thought. They were human; no less, no more…. At first, Bill had assumed that great knowledge and expertise belonged to every doctor – simply because they were doctors. He too had wanted them to be more than human…With time Bill came to hate and fear doctors, all doctors, for not being what he had expected – what the medical publicity men had painted them to be…he hated them for the smug complacency and incompetence of a portion of their numbers…above all he had hated them for the pain, both physical and emotional, they had caused him and his son. … Now Bill had come to the center: doctors were people, good and bad – like preachers and plumbers and politicians. This insight was liberating and ironic: It had been frank discussions with doctors about doctors that had freed him of the curse of doctors. Never again would the medical profession have such power to affect his thinking.”

PATIENT EDUCATION:

For years like many of you, I searched for information on Peripheral Neuropathy and found in many instances very little reliable or helpful material. What I discovered however were mountains of unhelpful attitudes among medical professionals with and without arrogance and the public at large toward neuropathy. There was then and is now the ever growing amount of snake oil or over exaggerated claims by a growing list of those who, motivated by money, prey on our fears and frustration along with our pocket books.

One of the best things I did was read Dr. Latov’s book and others of you may have read one of the books by Dr. Senneff on peripheral neuropathy and you were glad you did. Why is this so important?

One of the frequently asked questions is simply; “Do you know of a doctor who can help me?” Finding a doctor who has the clinical training to diagnose and treat neuropathy is not an easy task. As Russell L. Chin, M.D. Associate Professor of Clinical Neurology at Weill Medical College of Cornell University states, “there is insufficient training even in medical school in the clinical aspects of neuropathy”. It is an unfilled need. Then there is the fact that there is no one test to diagnose neuropathy and 99% of what the doctor must use is SUBJECTIVE and you have the receipt for a major patient/doctor problem.

The first POINT is that without understanding the realistic role of a doctor and what that means to your relationship, all of the searching can be for not.

The second POINT, without a basic understanding of the types and causes of neuropathy, your visit can be nothing more than a money making machine for those who ply on our desperate need for medical help.

In my own experience I saw 204 doctors during the years 1969 to 1999 in searching for help for what was to be diagnosed decades later as progressive polyneuropathy that would lead to serious disability. Like many patients – I had a medical problem – so I go to a medical doctor – find out what it is and get it fixed! This was not to be so.

From 1999 to 2005 it took visits to four neurologists before the fifth one was able to completely diagnose and help. The fourth one helped after trying to make me a diabetic for one year. Why? Diabetes is one of the major causes of peripheral neuropathy and his knowledge base for diagnosis and treatment was limited.

But fortunately following my second principle, I discovered knowledge in an “opinion paper written by 21 nationally known neurologists” on the use of IVIg in some neuropathies. I asked him about IVIg and the rest is a positive history. That is the good news, but the bad news was given the delay in diagnosis and treatment my disability was now severe, cost me two great careers and the damage to the nerves was now obvious. As Dr. Norman Latov states, early diagnosis and if possible treatment is critical to preventing severe disability.

So how do you find a doctor who can help while avoiding those who only want your money?

1. First understand that peripheral neuropathy is a neuromuscular disease. You need to find a Board Certified Neuromuscular Neurologist as this increases the odds of finding one who is able to diagnose and treat neuropathy. These are the same doctors who often treat multiple sclerosis and you can find them in the phone book.
2. You may want to visit a Neuropathy Center listed on The Neuropathy Associations (TNA) website. Or look at the TNA list of doctors listed on their website. Patients find some mixed results in this experience, as the worst treatment I received was from a doctor at a university neuropathy center. Yet there are good ones at these centers.
3. Other ideas include asking a nurse at the local hospital or doctor’s office. Ask a support group leader? Ask another patient in a support group. Look in the yellow pages for a doctor who treats patients with MS. That is how I found my current neurologist!
4. Avoid those centers and doctors who claim to cure ALL neuropathies and offer over-stated claims. One type treatment could never treat all neuropathies as some claim. Examples: Surgery may be good for fixing carpel tunnel, but not for chemo induced. Physical therapy may be good for an entrapment neuropathy or to maintain muscle strength or flexibility, but it will not cure many neuropathies related to diet or vitamin deficiency or celiac disease! Read Dr. Latov or Dr. Senneff’ s book so that you have a full understanding of the scope of neuropathy, types, causes, as this will help you sort out the snake oil and over stated claims of many who ply on our frustration and fears.

Doctors listening skills are important for they must be willing to actually look at your medical history and believe the patient.

During the 1990’s I had a primary care doctor on my first visit dismiss my medical history by stating, “Patients who usually write this much are usually depressed.” He made no further move to treat depression (my first clue), and then for ten years dismissed everything I shared based on this “tape” he learned somewhere about patients. This doctor cost me my major chance at getting a diagnosis and treatment to prevent severe disability and the loss of my second great career.

Some years ago I saw an article written by Neurologist Daniel Menkes who wrote this about neuropathy patients.

“In the context of neuropathic pain and suffering, a patient may experience significant degrees of pain and suffering even when there is minimal clinical evidence of nervous system dysfunction. As such, the patient’s symptoms should be accepted at face value.”

In the context of today’s focus on OBJECTIVE LEGAL proof of an illness for insurance payment and confirmation of a disability, this is a rare but important aspect. Herein lay the doctors dilemma in helping the patient!

With neuropathy, the SUBJECTIVE complaints of the patient become more important than the OBJECTIVE information demanded by the medical system.

Dr. Menkes goes on to state,

“The cornerstone of treatment of the neuropathy patient is the physician-patient relationship. This relationship must be based on mutual trust, respect, and realistic expectations…and the physician must understand that the “patient is doing the best that they can under the circumstances. This requires that the patient’s symptoms be accepted at face value. Physicians who dislike treating these patients probably ought to refer them elsewhere…as sooner or later the patient will discern the physician’s lack of tolerance for treating neuropathic pain and the symptoms.

Why is this important?

After you have found a neuromuscular neurologist who may have some clinical training in the diagnosis and treatment of the neuropathies, understand that you are seeking a doctor who values your subjective information and your medical history.

It was some years ago I read in a magazine about a doctor from Harvard University by the name of Jerome Groopman. The article spoke of the 18 second doctor – the doctor who asks you, “Why are you here?” – and 18 seconds into your response, cuts you off, and begins speaking, writing or doing something other than listening to the patient.

At that point two of the most important components of the doctor/patient relationship ended.

1. ACTIVE LISTENING. Communication between doctor and patient ended and for the neuropathy patient nothing could be as important as two way communication involving ACTIVE LISTENING on the part of both the doctor and the patient.
2. YOUR MEDICAL HISTORY. Your medical history must be understood as something more than items you put done on office paper work. Especially when there is no objective test to determine if you have neuropathy until after the DAMAGE to the nerves or its cause identified. DIAGNOSIS and UNDERSTANDING of the impact of neuropathy on your life are SUBJECTIVE insights and therein is the second major challenge to the doctor and patient.

Doctor Groopman dedicates one whole chapter on “A Patients Questions” in his book How Doctors Think and herein is a secret for UNLOCKING DOORS in this relationship.

Dr. Groopman writes,

It is the better doctor who may say, “Tell me the story again as if I had never heard it – what happened, when, where, and so forth.” The active listening doctor – expands the breadth of the dialogue and removes inhibitions that could hide clues about the neuropathy. He encourages the patient to ask, “What else could it be? Or is there anything that doesn’t fit?

I suggest patients learn the skill of forming good questions based on their limited knowledge and their own body. Example: ‘I have been having this problem and Dr. Latov says that this may cause neuropathy. What do you think is this possible?’

Asking effective questions comes from the fact that you the patient have educated yourself about neuropathy and understand a bit about the complexity facing you and the doctor! Frame your knowledge in the form of a question about what your doctor thinks about the information you have gained.

UNLOCKING DOORS – After finding a Neuromuscular Neurologist, when do you change doctors?

Once when I changed doctors, it saved my physical life and another time it saved my mental health! Let me share some clues. If the doctor has no time to listen to what is going on in your body, find another doctor. It is unlikely they will be able to help you unless they refer you to someone who could help. If a doctor states “Nothing is wrong with you” after telling them what is going on in your body and medical history, find another doctor. (Get a copy of the TV program, THE GOLDEN GIRLS, season five, “Sick and Tired” it is funny and perfect in understanding this principle.)

Doctor Groopman writes:

Such a response denies the fallibility of all physicians and second, it splits the mind from the body as if any psychological problem we might be having is not a medical problem to be addressed, but almost a punishment or is not relevant to medicine!

Again he writes,

For years we have been told to look at our objective tests, medical journals, mentors, and such for answers. But after writing this book I realized that I have another vital partner who helps improve my thinking. That partner is my patient or their family member who seeks to know what is in my mind, how I am thinking. There is no better way for me to care for those who need my caring than by looking to my partner, the patient for help in my thinking.

UNLOCKING DOORS – PREPARING FOR THE VISIT:

In the book by Mims Cushing (see RESOURCE tab of the website) Dr. Norman Latov writes a whole chapter on “Managing Your Physician” pages 132ff. He provides as other sources do, a whole list of things to consider in preparation.

Two important points:

We are often frustrated by a doctors seemingly disregarding the information from other doctors and doing their own testing as if to just make money. Well there is another reason for this as each doctor both ethically and legally must independently come to their own decision and actions for the patients. It is unfortunately however that this requirement to often prevent doctors from the ‘coordinated team’ approach that is required in helping neuropathy patients.

SO WHAT DO I DO?

Prepare a written summary for the doctor, but keep it short and brief. Do not overwhelm them with too much side information. (SEE THE DVD ON ‘DUMPING’).

Provide a short summary history on the first visit.

On subsequent visits describe current symptoms with the scale of severity and frequency for each.

Add a list of prescriptions needed, along with a list of your current medications and supplements.

Dr. Latov provides more specific guidance in Mims book to help you prepare for your visit.

What we need is a doctor who “cares” and “respects you” the patient. I remember the first doctor in 1999 who told me I had Peripheral neuropathy following 31 years of fear, frustration, anger, confusion, and insults at every turn with over 200 doctors. I later wrote him a letter stating the following:

I want to share with you what your listening did for me as a patient. You actively listened and just that fact alone made me feel better even if you did not have many answers on what to do. You took my medical history seriously and my subjective complaints you held seriously. This was reflected in everything you did and said. You did not dismiss me. You were more than a doctor with a degree; you were a physician within the best meaning of that term. Your caring became my hope and the foundation for my continued strength and determination to find help for my neuropathy and actually saved my life when the autonomic neuropathy began shutting down my breathing. I cannot thank you enough and God bless you.

Dr. Mohamed Noshi called me the very next day and told me how much that meant to him!

AFFIRMATION of your illness is NO SMALL THING as it reduces ANXIETY, FEAR, DEPRESSION and thus the STRESS which works against your healing!

They are out there, the physician who understands the value of the doctor patient-partnership for patients with Peripheral Neuropathy.

Keep looking using Dr. Latov’s book in your search for the cause of your neuropathy, knowing your body and experience. Work with other patients to find ways to cope with and adjust to your neuropathy while seeking medical help.

Remember:

1. Doctors are skill/highly trained human beings – nothing more – nothing less.
2. Educate yourself on PN! Its causes, types, any cures.
3. Find a doctor who has the qualities discussed. Believes the patient’s subjective experience, values your medical history and knows how to actively listen.
4. Know when to change doctors.
5. Prepare for you visit like HOME WORK that must be done as it is your nickel, your visit, your time, and your health!

PATIENT TO PATIENT – Disclaimer: Patient to Patient articles are intended to be educational, not diagnostic or prescriptive and the patient is encouraged to seek help from their own private physician.

Copyright 2012 Neuropathy Support Network LLC. This article may be reprinted or published for educational purposes as long as the printing or publishing is not for profit and acknowledgement is granted the author. Contact him at gene@neuropathysupportnetwork.org.


http://neuropathysupportnetwork.org/blog/2012/04/doctorpatient-relationships-unlocking-doors/

How The HIV Virus Itself Can Cause Neuropathy

Many doctors and HIV specialists still maintain surprise when HIV patients report neuropathy despite their never having used the older, so called 'D'Drugs (Zerit, Videx etc) or having long since stopped using them. The idea that neuropathy for people living with HIV could only stem from those drugs, or other diseases like diabetes, or cancer, is difficult to dislodge from medical specialists who studied the area long ago. The fact is that it has been known for some time now that the HIV virus itself can play an active role in bringing on neuropathic problems. The fact that numbers of neuropathy patients who also have HIV are growing, despite the withdrawal of the old drugs, shows that the cause had to come from somewhere else. The prime suspect then becomes the virus itself and more and more studies are proving exactly that. Today's post comes from reports from the CROI (Conference on Retroviruses and Opportunistic Infections) in 2011 (see link below). It discusses a study which reveals that neuropathy can occur in the first few months of infection. Not an easy read but the message is clear.

Signs of Peripheral Neuropathy Associate with Elevated Inflammatory Biomarkers in Blood and Cerebrospinal Fluid in Primary HIV Infection
Reported by Jules Levin CROI 2012

From Jules: Study reports 35% of ART-naïve patients during early/primary HIV-infection have neuropathy & 65% of these have symptomatic neuropathy, that this study finds appears to be caused by nervous system immune activation that begins during early/primary HIV infection. Since CSF viral load levels were similar in patients with & without neuropathy the investigators feel the neuropathy appears to be due to the immune activation that starts shortly after HIV infection.

Samantha XY Wang1, Marie Grill2, Evelyn Lee2, Julia Peterson2, Emily Ho3, Emilie Jalbert4, Elizabeth Sinclair2, Dietmar Fuchs5, Richard W. Price2, Serena Spudich1
1Yale University, New Haven CT; 2University of California, San Francisco (UCSF), San Francisco, CA; 3University of Washington, Seattle, WA; 4John A. Burns School of Medicine, University of Hawaii, Honolulu, Hawaii;
5Division of Biological Chemistry, Biocenter, Innsbruck Medical University, Innsbruck, Austria

CONCLUSIONS

· Signs and symptoms of peripheral neuropathy are present at a median of 3.5 months after HIV transmission.

· Pro-inflammatory cytokines MCP-1 and IP-10, and the macrophage activation marker neopterin are elevated in the CSF of PHI subjects with peripheral neuropathy, while HIV RNA levels are not.

· Percent CD8+ T lymphocyte activation in CSF is elevated in PHI subjects with signs of peripheral neuropathy.

· [therefore] Host-derived immune activation in the nervous system during PHI may contribute to development of peripheral neuropathy and neurological dysfunction.

INTRODUCTION

· Peripheral neuropathy (PN) is a frequent complication of chronic HIV infection.

· Systemic and nervous system immune activation begins during primary HIV infection(PHI).

· Immune activation markers associate with the presence of neurological disorders in chronic infection.

· We investigated whether PN presents during PHI and if correlations exist between infectious and inflammatory markers and signs of PN during this stage of infection.

Signs of Peripheral Neuropathy Associate with Elevated Inflammatory Biomarkers in Blood and Cerebrospinal Fluid in Primary HIV-1 Infection

Samantha Wang*1, M Grill2, E Lee2, J Peterson2, E Ho3, E Jalbert2, E Sinclair2, R Price2, and S Spudich1
1Yale Univ Sch of Med, New Haven, CT, US; 2Univ of California, San Francisco, US; and 3Univ of Washington Sch of Med, Seattle, US
Background: Peripheral neuropathy (PN) is a frequent complication of chronic HIV infection, potentially mediated by pathologic effects of systemic and nervous system inflammation. Given that immune activation in the nervous system begins during primary HIV infection (PHI), we hypothesized that PN may be present during PHI, and that correlations may exist between levels of infectious and inflammatory biomarkers and signs of peripheral neuropathy in this setting.

Methods: Subjects within the first 12 months after transmission as confirmed by laboratory testing underwent clinical exams and analysis of blood and cerebrospinal fluid (CSF) including quantification of infectious and inflammatory biomarkers at the baseline visit of a longitudinal study. Subjects were categorized as PN if they had one or more of the following on a standardized clinical (NeuroMacro) exam by a neurologist: decreased position, vibration, pinprick or temperature sense at great toes, distal pain or paresthesia, absent or decreased ankle jerks, or hyporeflexia. Two subjects with diabetes were excluded from the study. Statistical analysis employed the nonparametric Mann-Whitney U test.

Results: Fifty-eight ART-naïve subjects (100% male) were evaluated at a median107 days post estimated HIV transmission; 20 (35%) met criteria for PN, 38 were considered no-PN (NPN). PN tended to be older than NPN subjects (median 39.5 vs 34.0 years, p = 0.054), but the groups did not significantly differ in terms of days post-HIV transmission at evaluation or blood CD4 and CD8 counts. Elevated CSF neopterin (p = 0.003) and MCP-1 (p = 0.006) and blood neopterin (p = 0.006) characterized PN as compared to NPN. There was a trend for CSF IP-10 levels to be elevated in PN (p = 0.09). Evaluation between presence of PN and of cell surface markers of activation in CD8+ T lymphocytes and monocytes in a subset of subjects revealed a higher percentage of activated CSF CD8+ T lymphocytes in PN (p = 0.0035). There were no differences between the 2 groups in levels of CSF and blood HIV RNA, CSF white blood cells, CSF protein, or ratios of CSF:serum albumin.

Conclusions: Signs of PN are present in one third of HIV-infected individuals at a median 3.5 months after viral transmission. Significant correlations between signs of PN and CSF measures of neopterin, MCP-1, and CD8 T cell activation as well blood levels of neopterin support the hypothesis that a component of PN during this early period is mediated by host immune responses to HIV infection

http://www.natap.org/2012/CROI/croi_154.htm