What Your Doctor May Not Tell You About Neuropathy

Today's post from curediseases.pw (see link below) is very sensibly written and should appeal to all readers looking for just a little more information than their doctors are able to supply during a fifteen minute consultation. It addresses some of the myths surrounding neuropathy, many of them brought about because doctors just don't have the time to explain what's happening in any length. Time is the issue here...nobody is suggesting that doctors are being negligent...they just don't have the necessary time! The article fills in some of the blanks, with accurate and helpful information and you may well learn something you didn't know about this frustrating disease that's causing you so many problems. Worth a read.
 

11 Things Doctors Don’t Tell You About Neuropathy
November 19, 2016 ASHLEY

Have you ever learned a piece of valuable new information about neuropathy and thought to yourself, “I wish I would’ve known that when I was first diagnosed.” If you’re anything like me, this is a somewhat frequent occurrence. The reality is that while a lot has been (and is being) discovered about neuropathy in the scientific and medical communities, our understanding of it is an evolving process. Compared to a decade or two ago, we know considerably more now than we did – but even so, there is much that is yet to be fully understood about this silent but painful nerve condition.

As I look back on all I’ve learned about neuropathy over the years – from causes to treatments and everything in between – there is a lot I wish I’d been told about sooner. As with any battle against a chronic condition – knowledge is power. The more you know about your neuropathy – including its potential causes and the steps you can take to most effectively treat it and prevent it from spreading – the better your chances are of reducing your neuropathy related symptoms and preventing further nerve damage.

With that said, here are 11 things I wish I’d known about neuropathy when I was first diagnosed:

There are many potential causes – including medications

Some of the known causes of neuropathy include diabetes, chemotherapy, exposure to toxins, surgery, injury or trauma, vitamin B12 deficiency, excessive amounts of vitamin B6, autoimmune diseases, nutritional imbalances, excessive alcohol consumption and even medications. Knowing the cause of your neuropathy is one of the most important factors in determining how to treat it.



MORE: 7 Potential Causes of Your Neuropathy

In some cases, the cause of neuropathy will remain a mystery even after thorough testing and investigation. This is referred to as idiopathic neuropathy, meaning the cause is unknown. In most cases, however, doctors should be able to arrive at a cause (or number of causes).


Some Causes Are Reversible

One of the dreaded realities we often associated with neuropathy is that the damage is irreversible – that you’re stuck with the pain, tingling or numbness forever. While in many cases the damage and symptoms may last indefinitely, there are cases in which the damage may be reversible. This largely depends on the cause of your neuropathy and how quickly you catch it and take steps to reverse it (obviously, the earlier the better).

Among the causes in which damage has the potential to be stopped and even reversed are diabetes, vitamin B12 deficiencies, nutritional deficiencies, heavy alcohol consumption and medications. Of course, to have any hope of stopping or reversing the damage one must determine the cause of the damage and take immediate steps to remedy the problem.

For those with diabetes or nutritional deficiencies, managing blood sugar and improving diet is key to reversing the damage. Those with vitamin B12 deficiencies should work with their doctor to determine ways to eliminate the deficiency through diet or supplementation. Finally, those with neuropathy caused by alcohol or medications should restrict or eliminate the use of the substance causing the damage.

Nerve Damage Can Spread If Underlying Cause Isn’t Addressed

The peripheral nervous system is comprised of nerves running from the brain and spinal chord to other parts of the body. Damage to the peripheral nerves typically manifests itself first in our extremities – usually the hands or feet. What many neuropathy patients don’t realize is that over time these symptoms can spread to other parts of the body – including the arms, ankles, legs and more – if the underlying cause isn’t addressed. This is why both early detection and treatment are so critical. 

Look Out For Early Indicators of Peripheral Neuropathy

The earlier you can catch neuropathy the better your chances of preventing the symptoms from spreading. Some of the early signs of neuropathy to watch out for include:
Gradual numbness or tingling sensations in the feet or hands (which may spread into the legs and arms)
Sharp, stabbing pains
Intense burning pain
Extreme sensitivity to touch
Loss of balance or coordination
Muscle weakness, loss of motor skills
Restless Leg Syndrome (RLS)

Neuropathy Can Affect Muscle Control

Within the peripheral nervous system there are three types of nerves: motor, autonomic and sensory. While the most recognizable symptoms of neuropathy are related to the sensory nerves (i.e. pain, tingling and numbness) – nerve damage can manifest itself in other ways as well. When neuropathy damages the motor nerves, it disrupts the nerves ability to relay messages from the brain and spinal cord to various muscle groups. This can result in difficulties such as loss of balance, difficulty walking, loss of dexterity, cramps or spasms, muscle weakness and loss of muscle control.

MORE: What No One Tells You About Neuropathy & Muscle Control


Neuropathy Can Affect Autonomic Functions

Another group of nerves that can be affected my neuropathy is the autonomic nerves. The autonomic nervous system is a division of the peripheral nervous system that influences various internal organs such as the heart, stomach, liver, adrenal gland and more. Damage to the autonomic nerves disrupts the signals sent from the brain and spinal cord to these various organs – sometimes resulting in a disruption to the involuntary functions these organs are involved in.

MORE: Heartburn, Indigestion and 25 Other Symptoms You Didn’t Know Were Caused By Neuropathy

Here are the most common organs affected by damage to the autonomic nerves and the symptoms generally associated with them:


Pain Medications Only Mask the Pain

There are a number of prescription medications available to help cope with neuropathic pain. These medications have been a lifesaver for many sufferers (myself included) as they help take the edge off the pain and make it more manageable. Unfortunately, their purpose is simply to help mask the pain rather than help correct the underlying problem. In addition, there can be negative side effects associated with any prescription medication – so one must be aware of the risks.

MORE: Strategies for Fighting Neuropathy Without Prescriptions

Understanding that these prescription medications would not necessarily stop or reverse my nerve damage – but merely mask the symptoms – helped me to recognize the importance of trying various approaches to help address the underlying causes of my neuropathy. 

Natural Herbs & Supplements May Help

While prescription medications typically only mask the symptoms, nutritional supplements and herbs may help both relieve symptoms and address underlying causes. By addressing underlying causes or problems, they may help to slow or even stop the nerve damage from spreading. Some of the best supplements and herbs for nerve pain include:
Vitamin B12
Vitamin D
Magnesium
Alpha Lipoic Acid
CoQ10
Acetyl-l-carnitine

Vitamin B12 is especially important for nerve health. It helps build up and support the myelin sheath – a protective coating around the nerves that shelters them from damage and infection. Studies have shown that high doses of vitamin B12 can promote nerve regeneration of damaged nerves.

MORE: Top 10 Herbs & Supplements for Nerve Pain 
 
Alternative Therapies Can Help (but be patient)

Like a lot of people, I was hesitant about alternative therapies and skeptical about the promised results. However, alternative therapies have proven to be very beneficial in both helping me to manage my pain as well as improving my overall health. That said – there is no miracle therapy or treatment that is going to relieve my nerve pain overnight. I’ve found that with alternative approaches, the results are gradual – but they tend to be lasting results.

Alternative therapies for neuropathy range from low-impact exercises like yoga or tai chi to ancient practices like acupuncture. Here is a good list of popular approaches you may want to explore if you are suffering from neuropathy:
Acupuncture
Massage
Yoga
Tai Chi
Walking or stationary bike
Biofeedback
TENS therapy (Transcutaneous electrical nerve stimulation)

MORE: 10 Little Known Ways to Relieve Nerve Pain 
 
Diet Could Be Helping or Hurting Nerve Pain

Something else I wish I’d known was the impact that diet can have on the symptoms of neuropathy. There are certain foods that can aggravate nerve pain as well as ones that can help boost nerve health. Knowing which foods or ingredients fall into which category can make a big difference!

Among the foods that can make neuropathy worse are casein-based products (commonly found in dairy products), artificial sweeteners, gluten, added sugars and refined grains. When consumed excessively, alcohol can also harm the nerves and block the absorption of essential vitamins like B12.

MORE: 4 Nutrient Deficiencies That Are Killing Your Nerves

Foods that promote healthier nerves include ones rich in B-complex vitamins such as B12 & B2. Other important vitamins and nutrients for strong nerves include vitamin D, vitamin E, Magnesium and Zinc.
Joining a Neuropathy Support Group Can Help

They say that experience is the mother of all wisdom, so what better way to learn about neuropathy than to join others who have been living with it for years? Joining a support group or online forum can give you insights into living with neuropathy that you might not find elsewhere. They are also safe environments to ask questions and learn what experience others have had with various medications, treatments and therapies.

To find a support group near you, the Neuropathy Support Network has a useful support group search tool. In addition to local support groups, there are a handful of online support groups or forums. For finding information and support online, check out these 10 Resources Every Neuropathy Sufferer Should Bookmark.

Life with neuropathy can be painful, overwhelming and frustrating. As with anything, the more experience one has the more wisdom and insight he or she will gain into how to better cope with the hand that has been dealt. For me, the process has been gradual and frustrating (of course) – but I’ve learned many things that have resulted in small yet meaningful changes to make the road a little smoother. What things do you wish you had known about neuropathy when you were first diagnosed?

http://curediseases.pw/11-things-doctors-dont-tell-you-about-neuropathy/

Neuropathy Whats That Ask The Doctor

Today’s post from vitalitymagazine.com (see link below) is a simple question and answer article from a patient to a doctor. However, the doctor's answer is both thorough and easy to understand (a rarity in itself when writing about neuropathy). It will be helpful to people new to neuropathy who just want to understand what it generally entails. Of course, you could devote pages to information about the disease and its treatments but this doctor provides just enough information to properly educate the patient without losing him or her in the science. Worth a read, even for seasoned neuropathy sufferers (you never know, there may be something you've missed along the way.)
 

Ask the Doctor – Peripheral Neuropathy
by Dr. Zoltan P. Rona, MD, M.Sc. Nov.2015

If peripheral neuropathy is the result of heavy metals, detoxification is recommended

Dear Dr. Rona,

I have been diagnosed with Peripheral Neuropathy – would you be good enough to tell me if there is a natural cure for it. Thank you. – Karl Kostoff, Scarborough, ON

Dear Karl,
Peripheral neuropathy is a condition that results from damage to peripheral nerves, usually in the hands and feet. Numbness, tingling, burning and pain in the affected areas are the usual symptoms. This kind of neuropathy can be caused by physical trauma (e.g. car accident, frostbite), carpal tunnel syndrome, chemical trauma (acid burns, cancer chemotherapy) and diabetes (damage by chronically high blood sugar levels). Other causes are long periods of pressure on the nerves, sitting for extended periods of time, atherosclerosis, autoimmune disorders, kidney disease, hypothyroidism, toxic heavy metals (mercury lead, arsenic) and some drugs.

The following diseases can all be associated with peripheral neuropathy and should be ruled out by your doctor: AIDS, cancer, hepatitis, Guillain-Barre syndrome, HIV, Lyme disease, polyarteritis nodosa, rheumatoid arthritis, sarcoidosis, lupus, and amyloidosis.

After ruling out and treating the underlying causes of the symptoms, conventional medicine treats the condition with antidepressants (amitriptyline, imipramine) and anti-seizure drugs (phenytoin, carbamazepine, gabapentin). Unfortunately, some of these drugs themselves cause neuropathy as a side effect. If diabetes is the cause, better control of blood sugar is the appropriate treatment.

Before trying any treatment for neuropathy, see your doctor for lab testing to rule out treatable conditions. Some doctors will refer you to a neurologist who might want to do some special tests on your nervous system to rule out tumours and other rare causes.

If no explanation for your neuropathy has been found and you have exhausted conventional sources without success, I suggest you look into some other potential causes of your symptoms and consider Complementary and Alternative Medical (CAM) treatments.

Other Potential Causes and Treatments

Additional causes and treatments of diabetic neuropathy can include:

1) Side effects of certain drugs, especially antidepressants (e.g. amitriptyline) and cholesterol-lowering drugs (e.g. statins) can cause nerve damage. If any of these are involved and the drugs are not absolutely necessary, find alternatives with the help of your doctor.

2) Toxin exposure (e.g. benzene, fluoride, chlorine, lead, arsenic, mercury, cadmium, ammonia, arsenic, etc.). If you suspect that you are contaminated with these or other toxins, start to look for sources of exposure in the home and office, and begin eliminating them (ie. tap water contains both fluoride and chlorine), and sources of heavy metals can be found in many household products (see EWG’s “Dirty Dozen” posted at: http://tinyurl.com/nwg6fnu). While eliminating toxic contaminants from your environment, it’s also smart to begin detoxification protocols – sauna treatment or chelation therapy may be able to help you (see Resource List at end).

3) Chronic Inflammation in the lower back (sciatica, piriformis muscle entrapment) can reduce blood flow to the nerves in the spinal column. Chiropractic, osteopathic treatment, massage, and acupuncture treatments may be of help in such cases.

4) Nutritional deficiencies, especially vitamin B-12, folate, and omega 3 fatty acids. High doses of a good B complex (100 – 500 mg daily) may be of considerable help. These can be taken orally as well as injected for a more direct and powerful result.

5) Excessive alcohol use can damage nerves anywhere in the body by depleting the system of B vitamins.

6) Food toxins like aspartame have been documented to cause nerve damage. Use natural sweeteners like coconut sugar, if you must. Also, food additives, dyes, GMO foods and other adulterated foods can be involved. Follow an organic diet as much as possible.

7) Use Alpha Lipoic Acid (ALA), a very effective antioxidant proven to help peripheral neuropathy, especially if associated with diabetes. The usual effective dose is between 600 and 1200 mg daily taken with food. ALA is also effective in the natural treatment of high blood sugar. This supplement should be taken for at least six weeks but may be taken continuously for years without significant side effects.

8) Use capsaicin (the active ingredient in cayenne pepper). It can be applied topically mixed in a cream to reduce pain and discomfort from peripheral neuropathy several times a day. It can also be swallowed in capsule form (500 mg, 3 times daily with food) for relief.

9) Use Magnesium Bisglycinate – 400 mg. twice daily, and use Magnesium Chloride gel topically several times daily. Both are important to nourish damaged nerves and relieve symptoms. Magnesium supplementation is especially important for diabetics to reduce complications of that disease.

10) Glutathione (Setria version) – 1000 mg daily can work wonders for just about any neurological condition. (Furthermore, the results of glutathione administered intravenously have been quite impressive.)

One or more of these natural remedies may work for you. In some cases, especially in seniors, intravenous vitamins and minerals may work better than the oral equivalents. I recommend that you work with a natural health practitioner to get a personalized treatment plan.

http://vitalitymagazine.com/article/ask-the-doctor-peripheral-neuropathy/

What A Neuropathy Patient Deserves From His Her Doctor

Today's very good post from blog.aapainmanage.org (see link below) written by a doctor, contains advice for both doctor and patient when it comes to chronic pain conditions like neuropathy. The doctor needs to look at far more than the current symptoms the patient presents and the patient can read this article and reasonably expect that the doctor carries through with most of the suggestions here, in order to come to the best possible diagnosis. It's not rocket science but you'd be amazed at how many stories emerge of doctors who diagnose and prescribe drugs, based on their ten minute time slot with the patient and nothing else. Neuropathy (nerve damage) needs a far more structured approach than this and the patient who has often been in pain and discomfort for months and even years already deserves a proper holistic approach. There is no cure for neuropathy and the current treatments and drugs leave a lot to be desired in terms of success. Most often it's a case of 'suck it and see' but given the huge numbers of people with neuropathy across the world, patients deserve better. This article goes some way to addressing the problem and is well worth a read.

Strategies for Evaluating the Patient with Chronic Pain
Written by W. Clay Jackson, MD, DipTh, Vice President of the Board, Aug 16, 2016, 

A comprehensive evaluation of the patient with chronic pain is rarely straightforward, and it begins with the recognition that a complete cure is unlikely. The patient’s pain experience may be complicated by numerous factors, including lack of an obvious pathological cause, concomitant anxiety and depression, and a downward spiral of inactivity and lowered self-esteem. Often, medications used to treat the pain may themselves cause side effects that contribute to the patient’s reduced function.

The skillful clinician will work with the patient, incorporating time-efficient tools to determine a treatment plan that combines a variety of modalities and may or may not include the use of opioids. With chronic pain patients, the evaluation is key: Failure to identify all the factors that contribute to the pain can lead to ineffective treatment, further deterioration, and mutual frustration, not to mention legal and regulatory consequences. A seasoned clinician listens carefully to validate the patient’s pain without allowing elaborate descriptions to derail the timing and purpose of the visit. For most patients with persistent pain, the goal of treatment is not the complete relief of pain, but rather improvements in the patient’s physical and mental functioning that result in an improved quality of life as he or she takes increasing responsibility in his or her own therapy. Patient and clinician may be a traveling a long and bumpy road, but the outcome can be meaningful and beneficial for both.

The Assessment Process

There are numerous guidelines for managing the patient with chronic pain (1-4). Having a routine for the evaluation ensures that relevant data are captured. The clinician should evaluate and document the patient’s pain history including the nature, location, intensity, and duration of the pain; current and prior pharmacological and nonpharmacological treatments; factors that worsen or improve the pain; underlying or coexisting conditions; and (importantly) the effect of the pain on the patient’s life. An assessment of function should include the impact of the pain on the patient’s family and social life, employment, and sleep, and provide a baseline for follow-up evaluations. The clinician should also be alert to signs that the patient is minimizing or maximizing the subjective reports of the pain or, in cases of cognitive impairment, lacks the proper resources to describe it (3).

As the noted clinician Sir William Osler stated, it is more important to consider what kind of patient has the disease, rather than what kind of disease the patient has. The treatment of the patient with chronic pain proves time and again the truth of of his aphorism. Thus, I include questions about depression, anxiety, posttraumatic stress disorder, and other factors that might impact pain, including stress levels at home or at work. I consider the patient’s capacity for chemical coping, or the likelihood of using pain medication to cope with life’s stresses. And, of course, any evaluation that may lead to a trial of opioids should include an assessment of the patient’s risk for opioid misuse, but it also should include a qualitative assessment of the patient’s goals. What are the patient’s functional goals? How does the patient define functionality? What are simple, concrete things the patient wants to do in the next 30 days? How can treatment help the patient reach her goals?

When reviewing the pharmacological history, I attempt to ascertainwhether the pain is a part of the history or consumes the history. I ask which medications has the patient tried: nonsteroidal anti-inflammatory drugs (NSAIDs), serotonin norepinephrine reuptake inhibitors (SNRIs), nerve cell membrane stabilizers (anticonvulsants), and/or opioids. I like to think of these as the four pharmacologic pillars of pain relief, which often yield salutary results when used in combination. Is the patient equally balanced on all four pillars, or is he leaning on just one?

A comprehensive evaluation may take some time, but several strategies can be used to work within the time constraints of the office visit, especially in primary care practice. A comprehensive questionnaire can be filled out by the patient before the initial appointment, providing key historical information even before the patient enters the exam room. Self-reporting pain scales and screeners, such as the Brief Pain Inventory (BPI) (5), also can help consolidate information and maximize the time before the visit. I often bring the patient back in a week or two, or see the patient more frequently in the beginning of the treatment plan, to continue the initial evaluation. When dealing with a pain patient who may be considered difficult because he has lost the ability to cope with life, it is tempting to try to rush the evaluation. But most such patients have complex issues and histories that require a commitment on the clinician’s part to take the time to unravel them.

The clinician should perform a focused physical examination based on the patient’s history and carry out appropriate diagnostic testing. Quantitative measurements of the patient’s capacity for successful opioid treatment can be obtained from urine drug screens, electronic databases, and standard tools for risk stratification, such as the Opioid Risk Tool (6) and the revised version of the Screener and Opioid Assessment for Patients with Pain (SOAPP-R) (7). In addition, the Sheehan Disability Scale (8) and the WHO-5 (9) are very helpful to assess functionality and wellness (a predictor of resiliency). The PHQ-9 (10) is a useful scale for depression, which often co-exists with chronic pain and will impact the patient’s care.

Treatment Considerations

The patient-clinician relationship is best viewed as a collaborative partnership; whereas patient demand should not determine the choice of a therapy, it should inform the choice. Many patients want to combine complementary and alternative medicine options with pharmacological therapy, and the assessment will help determine which therapy will provide greatest benefit. If the patient has issues with gait and balance, for example, physical therapy can improve functionality and decrease the potential for falls. We would also recommend other strategies such as fall-proofing the home, and learning ‘tricks’ for safe and less painful walking. For patients with localized neuropathic pain, dry needling techniques may be effective. Massage, either alone or combined with topical treatments such as NSAID-based gel, may ease musculoskeletal and soft tissue pain.

Most complex pain patients will be taking multiple medications, so I try to maximize their effectiveness during treatment. For example, switching a patient who is already taking a selective serotonin reuptake inhibitor (SSRI) to an SNRI will often provide additional analgesia. I try to prescribe treatments that will ‘multitask;– give multiple therapeutic effects from one molecule. Another example: if lack of sleep is an issue, I usually give gabapentinoids at night. Of course, opioids may also be required, if the risk/benefit ratio is appropriate, and non-opioid therapies alone have failed.

Treating patients with chronic pain can be challenging, but I have developed strategies for dealing with some of the frustrations. I talk with my colleagues, keep up to date with legislation and CME, and, most importantly, I trust my clinical judgment–especially when I am confident that my evaluation has been comprehensive and has involved collaborating with the patient. I am comfortable treating my patients with chronic pain, even when they become angry and disagree with the treatment decision. Because I have laid the proper groundwork, I view this not as a treatment failure, but as an opportunity to strengthen the therapeutic relationship.

References 
 
Irving G, Squire P. Medical evaluation of the chronic pain patient. In: Fishman SM, Ballantyne JC, Rathmell JP, eds. Bonica’s Management of Pain. 4th Baltimore, MD: Lippincott Williams & Wilkins; 2010:208-223.
Fishman SM. Responsible Opioid Prescribing: A Physician’s Guide. Washington, DC: Waterford Life Sciences; 2007:13-29.
American Geriatrics Society Panel on the Pharmacological Management of Persistent Pain in Older Persons. Pharmacological management of persistent pain in older persons. J Am Geriatr Soc. 2009;57(8):1331–1346.
Chou R, Fanciullo GJ, Fine PG, et al., for the American Pain Society- American Academy of Pain Medicine Opioids Guidelines Panel. Clinical guidelines for the use of chronic opioid therapy in chronic noncancer pain. J Pain. 2009;10(2):113-130.
Cleeland CS, Ryan KM. Pain assessment: global use of the Brief Pain Inventory. Ann Acad Med. 1994;23(2):129-138.
Webster LR, Webster RM. Predicting aberrant behaviors in opioid-treated patients: Preliminary validation of the Opioid Risk Tool. Pain Med. 2005;6(6):432–442.
Butler SF, Fernandez K, Benoit C, Budman SH, Jamison RN. Validation of the revised Screener and Opioid Assessment for Patients with Pain (SOAPP-R). J Pain. 2008;9(4):360–372.
Leon AC, Olfson M, Portera L, Farber L, Sheehan DV.. Assessing psychiatric impairment in primary care with the Sheehan Disability Scale. Int J Psychiatry Med. 1997;27(2):93-105.
Bech P. Measuring the dimensions of psychological general well-being by the WHO-5. QoL Newsletter. 2004;32:15-16.
Kroenke K, Spitzer RL, Williams JB. The PHQ-9: validity of a brief depression severity measure. J Gen Intern Med. 2001;16(9):606-613.

This story originally appeared in The Pain Practitioner, Spring 2014.

http://blog.aapainmanage.org/strategies-evaluating-patient-chronic-pain/

Tracking Down The Right Doctor For Your Neuropathy

Today's post from neuropathyjournal.org (see link below) is another excellent appraisal of neuropathy patients' problems in daily life, written by LtCol Eugene B Richardson. It talks about the lottery of finding the right doctor when you have neuropathy and how you need to persist and keep searching until you find one with at least some basic knowledge (or a willingness to do the research) of nerve damage and how it affects patients. He quite rightly sticks up for doctors who are dealing with multiple conditions at a single morning's surgery but nevertheless urges patients not to put up with shoddy treatment and lack of bedside manner. In most countries, you can search for a doctor until you're satisfied you're going to have a constructive relationship but we also have to be aware that in many countries, it's somewhat of a zip-code lottery and in many cases you have to take what you can get. In the west, we have the luxury of choice but please spare a thought for the millions with nerve damage, who are lucky to find a doctor at all, never mind one with specialist neurological knowledge. Having found your doctor, the article gives some sensible advice as to how to build up a relationship that will benefit you most but in all cases, doing your own research and taking some responsibility for your own health is not only important for you but may be just what your doctor is hoping for. Neuropathy needs a partnership to be controlled - if you already have that, fantastic but the majority don't. It's a long article but well worth the read.

Doctor/Patient Relationships: Unlocking Doors
By LtCol Eugene B Richardson, USA (Retired) BA, MDiv, EdM, 

By understanding important elements of the Doctor/Patient relationship, patients can participate in unlocking barriers which too often prevent them from getting the most out of visits to a medical professional.

THE CURSE OF DOCTORS:

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

One of the biggest discoveries of the father and his son was, “What a doctor is and what a doctor is not!” (See also the DVD Coping with Chronic Neuropathy chapter on this subject.) 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.

One of the best things I did was read the book by Norman Latov MD PhD Peripheral Neuropathy: When the Numbness, Weakness and Pain Won’t Stop and I was so glad I 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 ( What is Neuropathy by Waden Emery III MD FAAN Clinical Neurologist) your search for help will be less than desirable and the failure of a sound diagnosis and possible treatment could lead to serious disability. By 2004 without diagnosis and treatment there was major damage to both the motor and sensory nerves with an impact on the autonomic nerves. 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.

Now in 2015 we have come a long way and have made great progress in the field of neuropathy, but we still have a long way to go.

In 2004, 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?
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.
You may want to visit a Neuropathy Center and the NSN website has a list of doctors and centers and we are continuing to update this list. Patients find 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. You must not give up, they are out there for you. I found the best one who has been with me since 2004 by looking in the yellow pages for a doctor who treats MS, called them and asked about Peripheral Neuropathy and I have never left Dr. Waden Emery in Lighthouse Point, FL. He is now the medical advisor to our website and the NSN!
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.
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 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 an early 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.

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.
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.)

You might also want read the book Sick and Tired of Feeling Sick and Tired by Paul J Donoghue, PhD and Mary Siegel, PhD.

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, 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. See Books on Neuropathy.

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

About the Author

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

https://neuropathyjournal.org/doctorpatient-relationships-unlocking-doors/