Reasons Why Patients Should Join In With Social Media

Today's post from kevinmd.com (see link below) looks at the possibility of blogging for people living with chronic health issues. This blog also started for many of the same reasons described below and has grown into a large source of information for other neuropathy patients. I have learned so much from doing it and it has certainly provided a daily purpose in life to distract me from the ever-present neuropathy. Why not read Kevin Campbell's article and give it a go yourself - social media is not always intrusive; it can be very therapeutic as well.

4 reasons why patients should blog
KEVIN R. CAMPBELL, MD  JUNE 3, 2013

Social media has opened a whole new world for patients. Now, information about disease is readily accessible and available to everyone. Certainly, there are issues with reliability and accuracy of internet sources and this can create uneasiness and misunderstanding for both physician and patient.

However, the internet can also provide many new therapeutic possibilities. In particular, online support groups, twitter chats and blogging can provide a positive outlet for patients suffering with disease. Today, I want to focus on one of these Internet opportunities: the patient blog. Recently, a online article on iHealth Beat explored this concept of patient blogging and its benefits.

Just as commonly experienced in the climax and resolution phase of Greek tragedy, writing a blog about one’s experience as a patient can be cathartic. Patients with chronic illnesses or with a new diagnosis are often confused, frightened and angry. Numerous studies in the psychiatry literature have demonstrated that journaling or writing about one’s feelings and experiences can have a very positive effect on emotional health. Journaling has been shown to have several other unexpected benefits as well. In the age of the Internet and social media, journaling is now called blogging. Blogging can be a private posting (where only you or those you approve can see) or can be made public for anyone to see.

Blogging can have many benefits that are very similar to journaling. From a pure neuro-biological standpoint, while you are occupied with writing, the analytical left brain is engaged in the writing process. This allows the right brain to be free to feel, emote and create. In this setting, you are able to better understand yourself and the world around you. Specifically, there are four distinct benefits that patients can receive from blogging that I believe are worth mentioning:

1. Blogging helps to clarify thoughts and feelings. Often writing down our feelings provides a way for us to better organize our thoughts. Blogging can help patients with terminal illnesses better understand their disease and how they are reacting or adjusting to the challenges of the diagnosis and/or therapy.

2. Blogging helps you to get to know yourself better. Writing routinely will help you better understand what makes you happy and content. Conversely, writing will also help you better understand what people and situations upset you. This can be incredibly important when battling chronic disease. It is important that you are able to spend more time doing the things that make you happy and are able to identify and avoid things that are upsetting.

3. Blogging helps you to reduce stress. Patients who receive a diagnosis of a major illness or who suffer daily with the challenges of chronic disease often have a great deal of anger and resentment. It is human nature to ask questions such as “why me?”. Blogging about angry feelings can be a positive and therapeutic release of emotion. It allows for the writer to return from the blog more centered and better equipped to deal with negative emotion

4. Blogging helps unlock your creativity. Often we approach problem solving from a purely left brain analytical perspective. This is how we are taught throughout our education to attack problems in math and science in school. However, some problems are only solved through creativity and through the use of a more right brain approach. Writing allows the right brain to creatively attack problems while the analytical side of the brain is occupied with the mechanics of the writing process.

I believe that blogging can be just as important as medication compliance in patients with chronic disease. The diagnosis of a chronic disease can produce a great deal of stress and emotional angst. Patients who are able to deal with negative feelings and emotions in a more positive way are better suited to tackling their health problems.

As mentioned above, blogging has many benefits on our emotional health. By dealing with negative emotions and unlocking creativity, we are better able to deal with the realities of chronic disease and more effectively interact with friends and loved ones. I encourage everyone–patient, physician, family member or friend–to begin to blog. I expect that the health benefits of writing will be well worth the time in front of the computer screen and the insights that you may discover about yourself may be be life changing.

Kevin R. Campbell is a cardiac electrophysiologist who blogs at his self-titled site, Dr. Kevin R. Campbell, MD.

http://www.kevinmd.com/blog/2013/06/4-reasons-patients-blog.html

Why Should You Fire Your Doctor

Today's post from health.usnews.com (see link below) looks at a subject that  is almost taboo in many societies and that is changing doctor when you're not satisfied that he or she doesn't have your best interests at heart. In this day and age when patients are being expected to pay more for their treatment and insurance companies are making key decisions on our behalf, you can reasonably expect that your doctor will do his or her best to keep you on their books and give optimum advice concerning your health. The problem is that most of us are brought up to respect the doctor as being an all-knowing being who can't be wrong. However, in the age of internet where patients can find out a considerable amount about their problem on-line, the best doctors will try to establish a partnership that will result in the best treatment and best results for both parties. The days of the arrogant doctor who resents any input from the patient are long gone and maybe it's time to shop around as you would do for any service provider. That said, the vast majority of doctors are fantastic people who will only do their best for you and it is often the patient who is arrogant, demanding and aggressive. The patient has a responsibility in the relationship too!

When to Fire Your Doctor
A doctor you're unhappy with could be bad for your health. Here's how to know when to look elsewhere. 
By Angela Haupt April 18, 2014

Staying with a doctor you're not happy with is as harmful as staying in a relationship you know is bad because it's easier than making a change. But parting ways may be the healthiest move. Here are nine signs it's time to fire your doctor. (For simplicity, the references below are to male doctors, but men don't have a monopoly on unacceptable behavior.)

You and your doctor don't need to see eye to eye on everything, but it's helpful if you work well together. If you want a partnership, for example, a doctor who spouts commands is not the best fit; if you value warmth, consider ditching a formal, distant physician. "Some patients like doctors who are very direct and blunt," says Washington, D.C.-based family physician Kenny Lin. "And some patients can't stand that type of doctor because they think he or she isn't empathetic enough.”

He doesn't respect your time.

Do you routinely wait an hour to see your physician only to feel like he's speed-doctoring through the visit? You should never feel like you're being rushed. If your doctor doesn't take the time to answer your questions or address your concerns, there's a problem. The medical community is becoming increasingly sensitive to patients' precious time. When they're late for an appointment, some habitually tardy doctors have even begun compensating patients with money or gifts.

He keeps you in the dark.
 
A doctor should be open and thorough about why he recommends a certain treatment or orders a specific test, and he should share all results with you. "If a doctor doesn't explain himself, or at least not to your satisfaction, at that point a doctor is bad," Lin says. It's also important he uses terms you understand, rather than complicated medical jargon; otherwise, explanations are meaningless. Your health is too important to feel confused or uninformed.

He doesn't listen.

Does your doctor hear you out without interrupting? "It all comes down to communication and whether you feel like you're asking questions and they're not being answered," says Carolyn Clancy, former director of the Agency for Healthcare Research and Quality. She recalls visiting a doctor for a second opinion on whether she should go through with a procedure recommended by her dentist. He made false assumptions about her concerns, and she didn’t go back.

The office staff is unprofessional.

The receptionists are the link between you and the doctor. If they blow you off – or neglect to give your message to the physician, say, about side effects of a new medication – your health could be at risk. Even if you like your doctor, a bad office staff could signal it's time to look elsewhere.

You don't feel comfortable with him.

Doctors need to know intimate details you may not even share with friends or family members. If you're unable to disclose such facts, you and your doctor may not be the right match. A sense of unease about his decisions and recommendations, even if you can't say exactly why, is also a perfectly legitimate reason for cutting the cord, says Don Powell, president and CEO of the American Institute for Preventive Medicine, a nonprofit that promotes healthy behavior through wellness programs and publications.

He doesn't coordinate with other doctors.

Your primary care physician should be the quarterback of your health care team, managing each step of the medical process. That means keeping track of specialists' reports and instructions and talking with you about their recommendations. If he's slacking, an important piece of your care could slip through the cracks.

He's unreachable.

A good doctor is available for follow-up questions and concerns. Patient advocate Trisha Torrey, author of "You Bet Your Life! The 10 Mistakes Every Patient Makes," recalls the time her husband developed severe tooth pain on a weekend – and couldn’t reach his dentist. A growing number of doctors are making themselves available to patients via email, text message and Skype, and at the very least, you need to know that in an emergency, you won't be left hanging.

He's rude or condescending.
 
Time to part ways. Same goes if he trivializes your concerns as though they're not valid. One of the clearest signs you should move on is if he walks out of the room while you're still talking, Clancy says. If you don’t move on, chances are you’ll end up regretting it.

http://health.usnews.com/health-news/health-wellness/slideshows/when-to-fire-your-doctor

How Neuropathy Patients Should Be Tested And Diagnosed

Today’s post from podiatrytoday.com (see link below) takes a good look at diagnosing neuropathic problems. Many of you will be familiar with several aspects of these processes but maybe not all. It seems to me that this is a good blue print for how people presenting neuropathic symptoms should be examined, tested and diagnosed. The problem is that doctors are busy people and may not follow through with all these tests, yet they perhaps should, if they are interested in accurate diagnosis and prognosis. Thanks to the unique symptoms and features of neuropathy, this blog always supports the doctor who listens to a patient's story and background and makes a correct neuropathy diagnosis based on pretty much those alone. However, if demands are made on him or her to 'prove' their diagnosis for bureaucratic reasons or record keeping, then the least they can do is conduct a thorough examination and this article demonstrates how that should be done. Neuropathy patients may learn quite a bit about their disease just by reading this guide for health professionals.

Mitigating Some Guesswork In Treating Neuropathic Pain
Wednesday, 05/20/15 | 1018 Issue Number: Volume 28 - Issue 6 - June 2015
Author(s): Cynthia Cernak, DPM, Eric M. Larsen, DPM, and Robert H. Odell, MD, PhD
 
Diabetic Neuropathy
 
Neuropathies take many forms depending on anatomic location. A mononeuropathy affects a single spinal or peripheral nerve with the cause likely to be a distinct anatomic lesion (such as lesions due to disc disease or tarsal tunnel syndrome). Systemic neuropathies often cause symmetrical issues in the limbs. Common causes are diabetes, alcohol, chemotherapy, etc.

Accordingly, let us take a closer look at the differentiation and treatment of distal neuropathies. Peripheral neuropathies come from damage or diseases affecting nerves that produce symptoms related to dysfunction in the nerve itself. This is in contrast to nociceptive pain, in which the nerve’s performance is normal.

Consider the following patient. A 76-year-old female presents with diabetes and a HgbA1c of 7.6. The patient was in a severe car crash 15 years ago and has had low back pain since. She had breast cancer five years ago and had chemotherapy. The patient describes the pain as an “aching, burning pain” that makes it hard to sleep. She notes there is some reduction of the pain with walking. The patient reports seeing three other doctors who could not help address her pain.

The most crucial elements of the history are the symptoms and location of the neuropathy. See “A Guide To Signs And Symptoms Of The Onset Of Neuropathy” at right. It is important to document positive and negative findings because improvement in any of these can be valuable in tracking the progress of your patient.

Perhaps more crucial to the diagnosis, in our opinion, is the location of neuropathy. If it is peripheral, circumferential and roughly symmetric, one can be reasonably sure there is a systemic cause (such as diabetes or a toxin). The causes of asymmetric neuropathies, which are prevalent in the lower extremities, are typically associated with isolated lesions. Causes include disc disease, trauma and entrapments.

A proper history is crucial to find a cause. Did the patient work in an environment where she would have been exposed to heavy metals? Was she exposed to Lyme disease? One must know the social history and nutritional history to look for vitamin deficiencies of B6, B12, folate, vitamin D, etc.

Two useful tools are a peripheral arterial disease questionnaire and the neuropathy function index. These are easy surveys that will help in triaging, treatment and measuring a patient’s progress. 

How does one differentiate among the various causes of peripheral neuropathy? 
Developing an algorithmic approach can save time and medical resources. Ordering tests to rule out all possible causes could be very expensive. Clinical judgment can help narrow the list of possibilities.

Conducting An Effective Physical Examination
The physical examination should include a limited back exam and full lower extremity exam. As part of the foot exam, we utilize several objective tests. Standard tests include the Semmes Weinstein monofilament test, the Rydel-Seiffer eight-point vibration scale, sensory testing with a sharp and a dull instrument, temperature testing, Tinel’s sign, two-point discrimination, and pressure specified sensory testing. While exhaustive and time-consuming, these tests will serve to map the location (e.g. proximal spread) and quantitate the nature and severity of the neuropathy. These tests are quite useful in tracking a patient’s progress.

The loss of vibration and/or light touch sensation around the entire limb may mean undiagnosed diabetes or idiopathic peripheral neuropathy. Often, these findings represent a decrease in the function of the small nerve fibers. If these findings are confined to a single dermatome, one should suspect a lumbar radiculopathy, a more proximal entrapment syndrome or another type of neuropathy.

What Diagnostic Testing Can Reveal About The Cause Of Neuropathy
Blood tests can be useful in finding a specific cause for neuropathy. Hemoglobin A1c reflects the average blood sugar and can track a patient’s adherence over three months. To maximize the treatment of neuropathy, an HgbA1c of 7.0 or below should be the goal. The GlycoMark test (GlycoMark, Inc.) is a blood test that reports a two-week average measure of the maximum blood glucose.

Nutritional screening is important because the B vitamins and vitamin D are often deficient. Clinicians should check blood levels to minimize potential toxicity if patients are taking high doses of fat-soluble vitamins.

Comprehensive neuropathy testing includes: lead, mercury, arsenic levels, vitamin B6 level, B12 levels, a Lyme titer, RPR (rapid plasma reagin) syphilis test and complete blood cell count with differential to evaluate for possible anemia. Comprehensive testing should be individualized to each case and be the decision of each practitioner. Bear in mind that testing can be very expensive and may not influence treatment.

The “standard” in objective nerve testing remains nerve conduction/electromyography (EMG), especially if one suspects nerve entrapment. We believe there is little evidence for ordering these tests in diagnosing systemic neuropathies. Often, the report states “diffuse peripheral polyneuropathy with both axonal and demyelinating features,” which one would already know.

The A-delta nerve conduction study, a relatively new test for small fiber neuropathy, has been in use for over 10 years. We believe this test is more useful to evaluate efficacy of the neuropathy treatment but it is not widely available at this time.

The epidermal nerve fiber density test is a new gold standard that has emerged for the diagnosis of peripheral neuropathy.1 Physicians and labs advocate using one to three biopsy sites with a 2 mm punch biopsy. Common testing sites are: the proximal thigh (10 cm from the hip), the distal thigh (10 cm from the knee), 10 cm above the lateral malleolus and on the lateral midfoot. Systemic neuropathies often show a decrease in small nerve fiber density and this simple test can quantify improvement in neuropathy.

What You Should Know About Diabetic Neuropathy Treatments
Nutritional. Alpha lipoic acid, vitamin B complexes and vitamin D supplementation have shown improvement in neuropathic symptoms in numerous studies. According to a Cochrane Review in 2008, most studies did not show significant improvement in peripheral neuropathy using vitamin B only.2 
Using epidermal nerve biopsy, Jacobs found that a combination of L-methylfolate, methylcobalamin and pyridoxal 5’-phosphate (Metanx, Pamlab) decreased neuropathic symptoms and showed an increase in epidermal nerve fiber density.3

Pharmacological. Gabapentin (Neurontin, Pfizer) received FDA approval in 1993 and has been the subject of multiple double-blind studies. According to Moore and colleagues, the number needed to treat ranged between 4.8 to 8.7.4 Sixty-six percent of patients experienced adverse events and 12 percent withdrew because of adverse events. Serious events were no more common in the treatment group than placebo (4 percent).

Pregabalin (Lyrica, Pfizer) received FDA approval in 2004. Finnerup and coworkers state that the number needed to treat ranged from 3.3 to 4.7.5 In studies, 22 to 38 percent of patients taking pregabalin experienced adverse events with rare withdrawal from therapy due to side effects.5

Compound creams. An enticing treatment option to prevent systemic side effects, compound creams have shown mixed results for us. To our knowledge, no high-powered studies have demonstrated efficacy with compound creams.
 Most compounding pharmacies use their own specific combinations, which makes it difficult to determine which compounds are most effective and in determining the number needed to treat.

Current Insights On An Emerging Treatment
Combined electrochemical treatment (CET) has shown promising results in several small studies.6-9 We have covered our current treatment protocol in other previous published papers.7,8 These studies have shown up to 80 percent of patients experiencing significant relief from their neuropathic symptoms.6-8 

Before and after epidermal nerve biopsies have proven that combined electrochemical treatment increases the epidermal nerve fiber density. The combined electrochemical treatment shows very impressive results in comparison to traditional therapies for systemic neuropathies.

Larger studies are needed to improve the acceptance of combined electrochemical treatment by third-party payers. As long-term patient success continues to be documented at substantially reduced overall costs for neuropathy treatment, the third-party payers will be more forthcoming with appropriate reimbursement.

Dr. Cernak is affiliated with Weil Foot & Ankle Institute in Kenosha, Wis.
Dr. Larsen is affiliated with Weil Foot & Ankle Institute in Kenosha, Wis.
Dr. Odell is affiliated with Neuropathy & Pain Centers of America in Las Vegas.

References
Saperstein DS, Levine TD. Diagnosing small fiber neuropathy through the use of skin biopsy. Practical Neurology. 2009; 8(1):37-40
Ang CD, Alviar MJM, Dans AL, Bautista-Velez GGP, Villaruz-Sulit MVC, Tan JJ, Co HU, Bautista MRM, Roxas AA. Vitamin B for treating peripheral neuropathy. Cochrane Database Syst Rev. 2008; 16(3):CD004573.
Jacobs AM, Cheng D. Management of diabetic small-fiber neuropathy with combination L-methylfolate, methylcobalamin, and pyridoxal 5’-phosphate. Rev Neurol Dis. 2011; 8(1-2):39-47.
Moore RA, Wiffen PJ, Derry S, McQuayHJ. Gabapentin for chronic neuropathic pain and fibromyalgia in adults. Cochrane Database Syst Rev. 2011 16;(3):CD007938
Finnerup NB, Jensen TS. Clinical use of pregabalin in the management of central neuropathic pain. Neuropsychiatric Disease Treat. 2007; 3(6):885-891.
Odell RH, Sorgnard RE. New device combines electrical currents and local anesthetic for pain management. Practical Pain Management. 2011; 11(6):52-68
Cernak C, Marriott E, Martini J, Fleischmann J. Electric current and local anesthetic combination successfully treats pain associated with diabetic neuropathy. Practical Pain Management. 2012; 12(3):23-36.
Cernak C, Odell R, Carney P. Can combined electrochemical treatment have an impact for diabetic peripheral neuropathy? Podiatry Today. 2014; 27(7):20-24.
Carney PM. Quantum theory treats neuropathy better than pharmacology. The Pain Practitioner. 2014: 28-31
For further reading, see “Can Combined Electrochemical Treatment Have An Impact For Diabetic Peripheral Neuropathy?” in the July 2014 issue of Podiatry Today.

http://www.podiatrytoday.com/mitigating-some-guesswork-treating-neuropathic-pain