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.”
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.
- 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!
I would love your view regarding Neurologists…and . I have recently been seen by a top neurologist at a teaching hospital neuropathy clinic, who, in spite of dropping density ( I am borderline below the 5th percentile for my age), axonal swellings, excruciation pain, and a boatload of other symptoms, was 1. MEAN ( I had a healthcare professional with me who has known me for decades and can vouch for my credibility. She was appalled at how I was treated) and 2. Has told me that my diagnostics do not reflect the severity of what I am reporting. I have been a chronic pain patient for decades, and managed w/out meds, worked out, and did my best. However, this onset w/in the last 14 months of severe bodywide Neuropathic pain has rendered me homebound. I am not seeking drugs, I am seeking a diagnosis and guidance. He told me that he thinks there is a “strong psychogenic component”, etc etc. My internist is also upset and wants me to see a “smart, compassionate Neurologist who is open minded” to help figure this out, if we can. He gave me two names – BOTH out of town and I may be too sick to travel anyhow)..his first choice does not take insurance and has a reputation for having an office that is impossible to work with wrt getting records, etc. The second is clearly more traditional and conservative – and at a major teaching hospital. My concern, is that they are All In The Same Club. My current ( mean doctor) is well published as is the second suggested one. They all go to the same conferences and i imagine it is a small circle. I want an independent, impartial eval, but would also have to take my records – a new doc would see where they were from, and from whom, and for all I know they are best buddies. Insights? I would gladly share names of the doctors and institutions, but offline. Thanks for any advice you may offer
I will reply by E mail which is not as public. Had a terrible concussion form auto crash Dec 20th so a little behind in getting to everyone.
I so look forward to your reply…. this is full body and I feel entirely hopeless, homebound at this point.
I am certain this was Nitrofurantoin, and nobody will admit it, thus I cannot get treatment, IF THERE IS ANY????? See the article, “peripheral nerve toxic effects of nitrofurantoin” Arch Neurol/Vol 69 (No 2) Feb 2012,
I, so pray, that you are ok and the accident has not caused you more suffering.
Jody: I sure appreciate the kind thoughts and prayers. The concussion really scrambled my brain and slowly things are getting back in order. Short term memory is back about 80% and long term memory is doing much better. The truth is, we are both lucky to be alive as we turned upside down and slide on the roof of the car for over 100 yards. The seat belts saved our lives as we hung upside done being held by them. The angels were with us that day so we praise our Lord for his watch care so that we might continue to do the Lords work for patients.
Gene, Just wanted to say thank you for such a great and timely article! Every time I look at the website I discover something new. Your article on “Doctor/Patient Relationships: Unlocking Doors” couldn’t have come at a more needed time. The September meeting of the Grants Pass Peripheral Neuropathy Support Group topic will be on “How to Effectively Speak to Your Doctor and Be Heard” with attendees in a circle of conversation. I have been looking up resource articles and low and behold here is your article posted to our website. This will be a great resource for all to read and discuss. I appreciate all the hard work that is done by you, David Morrow and staff in keeping us all informed.
You are so welcomed JoAnn as like us you are passionate about helping others!! Gene