Be a boring patient, not an interesting patient

“She’s a really interesting patient!”

The doctor visiting the lady in question at home is correct.  Nothing about her illness either has been routine.  The progression of her disease has confounded her regular doctors for months.  Nothing about her condition is normal.  Medications have not worked as expected.  The original diagnosis — Parkinson’s — is in question.  All my training and expertise is inadequate, for I am an ENT surgeon, not a neurologist.  The only reason I am involved is that the lady is my mother, and this makes the uncertainty doubly difficult.

What makes my mother so interesting?  The answer is that she falls outside the bell curve of normal patterns of disease, and that makes both accurate diagnosis and treatment of her condition difficult. As a result, two years of uncertainty and deterioration have gone by.  The happy ending in our story is that the doctor is a specialized member of a team, qualified to make this observation, to re-examine the diagnosis, and to guide the medication to where it facilitates and does not cause harm. And we are lucky, because specialists like this are as rare as hens’ teeth, and to have them do a home visit in an area far removed from their normal environment is as good as winning a lottery.

Who wants to be an interesting patient?  Interesting in the medical context implies that that the disease process is itself highly unusual, or has broken the rules of normal behaviour, or is more pronounced than normal.  As we doctors often say, our patient has clearly not read the textbook description of his disease.

So much of medical diagnosis is in pattern recognition, to the point that advanced tests and special examinations are unnecessary except perhaps for confirmation and documentation.  “Common diseases occur commonly” is another memorable and useful statement, meaning that an unusual presentation of a common disease is more likely than the appearance of a rare disease.  For example, in an area where tuberculosis is common, any new lump on the body may well be a manifestation of TB, and doctors do well to adapt the process of investigation to exclude common conditions like TB first.

But the patient with an interesting condition breaks the pattern, and many doctors may not recognise a disease early due to the unusual presentation, symptoms and clinical findings.  This is where specialist knowledge and experience come to the fore, because the exclusions to the normal patterns may be recognised sooner, but certainly not all the time.  And PCP’s may have been a filter mechanism to screen out the mundane, making the specialist’s job easier.

I think back to interesting patients I have come across in my earlier career:  the acute inferior myocardial infarction that presented with acute left earache only, the large acoustic neuroma with no tinnitus or hearing loss, and the “minor” head trauma who months later had a skull x-ray that showed a knife blade buried deep in the brain.  Some were diagnosed by luck as much as by clinical skill.  I shudder to think of how many times I have missed the unusual diagnosis.

There are some pros to being an interesting patient.  The doctor’s attention may be stimulated, and his interest raised above the normal humdrum of ordinary practice.  Having an interesting pathology may enable the patient to jump the queue in referral to other specialists or hospitals, particularly if there are research interests.

But the cons outweigh the pros.  Diagnosis may be made later than expected.  Treatment of unusual pathologies is likely to be harder or more extensive.  It is in this realm of medical care, in fact, where the good doctors rise above the ordinary, where they earn more than their keep.

Primary care physicians are particularly challenged, trying to sort out the unusual from the mundane.  Many serious diseases start out “small,” with symptoms that are commonly innocuous.  In a lifetime of practice, a PCP may see a handful of patients with brain tumours, or leukaemias, but tens of thousands with headaches or tiredness.  No wonder interesting cases are often diagnosed late.

For all doctors however, the penalties for error are profound.  Patients expect their doctors to have “trained perfection” – meaning that, by merit of our training, we are expected to recognise these rare and interesting cases as early as the mundane.  The inescapable fact is that, without perfect care and awareness, in many cases we don’t.

The backlash of litigation has meant that doctors may see every patient as potentially being outside the box of normality, and, just to make sure, we will investigate and cover the unusual possibilities.  So recurrent headaches initiate MRI brain scans — just to make sure.  This is not economically viable.

I don’t have a solution to this problem.  I’m openly relieved every time I pick up something out of the ordinary in my patients.

I also know that I don’t want to be an interesting patient should fate decide that I fall ill one day.  I’d rather be the standard, boring type please.

Martin Young is an otolaryngologist and founder and CEO of ConsentCare.

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  • http://briarcroft.wordpress.com Emily Gibson

    Routine illness can be particularly lulling in a student health center in a University, where I work. Just in the last 8 months I’ve seen in otherwise “healthy” young adults:

    1) low back pain that ended up being bilat DVTs because of congenital absence of the inferior vena cava previously unknown to the patient (no leg symptoms or swelling)
    2) brief episodes of “spaciness” which turned out to be hypercalcemia caused by hyperparathyroidism which incidentally caused the discovery of thyroid cancer while the offending parathyroid was being removed
    3) acute abdominal pain acting like routine appendicitis that was a superior mesenteric artery infarction due to malrotation
    4) acute high fever and myalgias that presented like typical influenza ended up being bacterial endocarditis from a routine dental procedure only 4 weeks before–the patient did not survive the emergency aortic valve replacement
    5) “bloating” with a 6 month pregnancy size mass in the pelvis which was not the uterus–the patient had a large rare ovarian tumor and is undergoing aggressive chemotherapy
    6) “itching” without any obvious skin changes that ended up being primary sclerosing cholangitis

    Thankfully there were no significant delays in diagnosis or workup for these “common” presenting symptoms but the diagnoses are still devastating to the patients. I don’t like seeing “interesting patients”. I celebrate each time I say goodbye to a “boring” patient. But every time I knock on the exam room, I expect catastrophe waiting on the other side. That way, I’m never surprised and I’m always vigilant.

  • keepingthyme

    Not to mention “interesting” patients who have more than one thing going on, and there are also the hypochondriacs and drug seekers that complicate matters even further.

    Seems to me long gone are the days where one doctor cares for any particular individual. PCPs have become merely screeners and coordinators for other “specialized” doctors and insurance companies. The Marcus Welbys of the world didn’t just fade away, they were killed off by the Torte system. “Interesting” patients often must equate with “liability patient” in the minds of many doctors and thus are quickly referred on to more experienced doctors and a battery of tests performed under the guise of “rule out” but really fall under CYA. More and more of our doctors are becoming Dr. House look-alikes.

    And we wonder why it has become so expensive to see a doctor just to have that strange skin rash or recurrent headache checked out. I too would like to always be the boring patient with classic symptoms, but boring is becoming as extinct as Marcus Welby.

  • Sandy

    As much as the doctor might dislike having “interesting patients” it is much harder “to be” the “interesting patient” and the delay in diagnosis can lead to long-term consequences.

    A couple of years after I was diagnosed I had to find a new PCP – I interviewed him, asked if he had heard of my disease to which he answered “no – but he would learn”, which in reality made me trust him for being honest.

  • Kelsey

    I have been an interesting patient more that I would like. Doctors have told me “Wow! You should be a clinical case or something!” Really not what you want to hear when you are in the office.
    My first experience was at age 14. I had menstrual cramps, nothing more and had seen my doctor many times for it. Turns out I had a cantaloupe sized dermoid cyst on my ovary. The doctors were shocked to see it on the ultrasound as they never felt it in my abdomen.
    My second issue was thoracic and cervical muscle pains at age 28. Shortly after that started I was blessed with chronic urticaria that was unresponsive to antihistamines. No one thought the two symptoms were related. This ended up to be hashimoto’s thyroiditis.
    Being an interesting patient makes for months and sometimes years of uncontrolled symptoms. I would not wish this for anyone.

  • http://strangelydiabetic.com Scott Strange

    You know… the patient really has no choice in whether they are “interesting” or “boring”.

    • Lil A

      True…so true.

  • Geordon VanTassle

    I recently had the opportunity to play “House: The Home Game” that landed me in the hospital for about 3 weeks. My adventure started with a trip to my PCP in Nov of 2010, where I was diagnosed with perihylar pneumonitis and given antibiotics. Between November and March, 2011, I made several trips to my PCP for identical symptoms: Shortness of breath, daytime tiredness, fatigue, malaise, and severe wheezing (audible even without a stethoscope). I was given several courses of antibiotics and at least one short course of steroids.

    I was sent to an ENT to see if I had something wrong in my sinuses that might be causing sleep apnea, but he found nothing there, either. He, in turn, sent me to a pulmonologist, which is where I finally found my diagnosis.

    When I saw the pulmonologist, I had already had a steadily declining SpO2 for the past 6 weeks, and was holding at about 89-91%. He put me in the hospital for observation and investigation. During my time in, he tested me for some 30 different pathogens (incl. mold, fungi, bacteria, viruses). I had x-ray studies and I had CT scans of my lungs. Those showed “something” in all lung fields, but as I sat in the hospital, my breathing was quiet, no longer wheezing and crackling. The pulmonologist tried to do a bronchoscopy on my first week in, but I was only satting at 88% on 100% oxygen (!), so that was aborted. He ordered an echocardiogram, as well. In short, I had a “million dollar work-up” in which everything but the imaging studies came back as clear/healthy. (One positive of this is that I learned that I am generally healthy, even though I am obese and lead a sedentary lifestyle)

    Fast forward a week or so on high-dose Solu-Medrol and we got a successful bronchoscopy using high-flow O2. Pathology was not able to determine anything notable from the sample, so it went off to Mayo for a second look. Apparently, the sample was inconclusive for them, too.

    We ended up scheduling me for a wedge biopsy (they went into my chest and cut out a bigger piece of my lung), which the local path lab also did not determine anything. This, too went off to Mayo, where a presumptive diagnosis of either “non-specific interstitial pneumonitis (NSIP)” or “hypersensitivity pneumonitis” caused by my pet bird. (I have rehomed my parrot to a loving family.)

    As a patient, it is distressing when the doctor tells you that you have a rare disease. It is also is disheartening when all of the tests that are run (and I had many) don’t tell the doctor anything useful. The worst, though, was when we had to call in the “big guns” at one of the leading medical centers in the country, and even THEY were not sure.

    If you are a doctor who runs up against a “zebra” problem, your patient really wants to know what’s being done, even if it’s done out of sight.

    P.S. I’m still on prednisolone (2/3 through a 60 day course) and am feeling better than I have in years. My breathing is amazingly clear, and all of my symptoms seem to have abated, although I am still scheduled for a sleep study to rule out sleep apnea.

  • Pauline

    Dr. Young,

    I wonder if your mother has been checked for a B-12 deficiency? I watched my mother’s health worsen over several years. Her physicians were not able to identify the cause of her extreme fatigue, shortness of breath, eventual mental confusion and other symptoms.

    It wasn’t until I started having symptoms as an otherwise active and healthy 48-year-old that I found how severely a B-12 deficiency can impact your health. After two years of multiple tests which all came back as ‘normal’, I found (by researching my symptoms online) that I was B-12 deficient!.

    I presented my research to my physician, and eight hours after my first injection, my shortness of breath was gone. Within weeks, the tingling in my hands and feet improved. The tingling in my hands never returned and my feet only tingle again if I try to stop my injections for a few months. The fatigue returns as well. My very first neurological symptom was a ‘shadow’ in my eye, which a retinal specialist said was a retinal occlusion. I believe it was caused by the B-12 deficiency as well.

    The problem in my diagnosis was that my B-12 level never fell below what the U.S. labs rate as ‘normal’. So, though they tested me for it, none of my physicians thought to put me on injections. ( I’m not a vegan, by the way).

    Two neurologists had dismissed B-12 deficiency as the cause and were leaning towards MS as a diagnosis. Two brain scans showed ‘white spots’ but not congruent with MS patterns. I was out of the range of ‘normal’ on all regards.

    Since that time, in my family we’ve discovered that several of my siblings have a B-12 deficiency and were also ‘problem patients’ with a list of undiagnosable random symptoms. They’ve all improved once on B-12 and D in some cases. Emotional stability has returned. :)

    I pulled my mom’s hospital records and saw where her blood cells were marked ‘large’ and then ‘giant’ by the lab. But, because her B-12 wasn’t off the low end of the chart, though her level was just under 300, she was not considered deficient and was given another diagnosis, She never improved, worsened and eventually died.

    How much of her disease history was B-12 related will remain a mystery. However, looking back, I recognize that many symptoms were likely B-12 related such as her funny way of complaining that “My teeth keep biting my tongue” – i.e. swollen tongue, shortness of breath, fatigue, and eventually congestive heart failure, among a list of other symptoms.

    The USA seems to be behind the rest of the world in adjusting our lab values for B-12 deficiency. I think anyone with random symptoms that cannot be resolved should be tested and if under 500, treated. It’s harmless to treat and impossible to ‘cure’ without it (if that is the culprit).

  • Terry MD

    I have long told my patients that they don’t want to be ‘interesting’ to a doctor.

    I had a lovely young couple and the wife had a weird illness which with paresthesias in her feet and progressed to ascending paralysis to the level of her diaphragm over six months. I told them that her condition was very ‘interesting’ and that when a doctor says that something is ‘interesting’ it means he really doesn’t have a freakin clue about what is going on.

    I had exhausted all local resources in the way of specialists and testing available and decided to send her over 200 miles away to a guru neurologist for assessment.

    After a very long day of intensive testing the neuro walked into the room with a raft of test results and said “Well, this is all very interesting.” At which both husband and wife started laughing hysterically and almost fell off their chairs.

    This reminds me of the Chinese curse – “May you live an interesting life!”

  • http://Www.drmartinyoung.com Martin Young

    Pauline

    Looking into it at the moment!! Great suggestion. The neurologist who visited made the suggestion straight away. We’re still waiting for the test results.

    Thanks so much for your interest!

  • Renee’

    In reply to Sandy; beware the PCP that says he will ‘learn’. My personal experience, even after thouroughly interviewing him, only wanted to learn as much as he thought was already ‘common’. As a rare disease patient, I’ve seen and lost many doctors because I was labeled too ‘complex’. They just give up. Mostly, they loose interest quickly, after all, they’ve already been to medical school. And NO doctor I’ve ever seen likes to admit that their patient knows more about their disease than they do. I got so tired of treated as a liability, I gave up on them. I rather wait out the inevitable conclusion on my own terms than be treated like that.

  • Danielle

    I, unfortunately, am an interesting patient. I suffered from undiagnosed Cushing’s Disease for much of my adolescent and early adult life. After gaining over 100lbs among many other debilitating symptoms, someone finally listened when I said SOMETHING ISN’T RIGHT! After two pituitary surgeries and a bilateral adrenalectomy, I now deal with the daily challenge of having no adrenal glands. Just because a disease is rare doesn’t mean that NOBODY has it!

  • http://www.womeninpainawareness.ning.com carol

    I also was, and am, an “interesting patient”.
    I am tired of hearing. “I have never seen this before.” or for one part of it, “You have this worse than anybody I have ever seen or heard of.” Worse still, “There is nothing for us to do for you because we do not have a clue what is causing it.”
    I have trigeminal neuralgia (TN) V1, V2 (L). It started at age 26, too young according to the books and the area (V1,V2) too uncommon for it to really be TN (for the diagnosticians)
    After almost 2 years at a clinic where no one had a clue (until I dated one of my residents who diagnosed me on a date – too long for here) I went to a private doc. By happenstance he was a major name in the field of neuroophthalmology. As a result all my referrals were to big name docs.
    The problem with being interesting is that you often end up seeing the ‘bigger’ names. I would have preferred to see the lesser knowns so, if needed, there was another level of doc to see. Instead when I did go to a ‘lower level’ they would call the other docs I have been seeing to see what they said so there was never really the ability to get a second opinion.
    I’ll take the flu over TN anyday. With the flu, you;re never interesting but they know what to do for you.

    • http://www.drmartinyoung.com Martin Young

      Carol – thanks for your comment.

      Has an ENT looked into your nose? There is an entity called Sluder’s Neuralgia that can cause atypical facial pain, as well as a nasal septal spur that grows from the nasal septum and digs into the lateral nasal wall. These are often confused with trigeminal neuralgia.

      I don’t like giving false hope, but if you have not, it may be worth seeing someone.

      • http://www.womeninpainawareness.ning.com carol

        Thank you for your reply. In my case my tic/atyp facial is the result of a partial sturger-weber (interestingly, I have a vascularized hemangioma over v1,v2(L) ) however, it is definitely worth checking out. I have had ent check due to a granuloma but I do not know if this would be obvious absent looking actively for it (?).
        Thank you for suggesting this.
        Carol
        ( http://apainedlife.blogspot.com/ )

  • Gorelab

    A couple of months ago I was diagnosed with polyglandular autoimmune syndrome type II, I was very lucky to get a quick diagnosis. However many with this or Addison’s Disease aren’t so lucky. It sadly leads to much bitterness at the medical community. I can understand to an extent. It must suck to have something wrong with you and be told it’s depression. But at the same time I can understand why this happens. The symptoms of many endocrine disorders are very unspecific and line up with many many much more common disorders.

  • Maggie

    I was an interesting patient for almost two years – very frustrating as symptoms appeared and I deteriorated – with everything seeming to go wrong progressively! I was showing signs of dementia, cholinergic urticaria (to both warm water and humidity), arrythmia (pvc), infertility, pregnancy loss, shortness of breath, muscle loss, weight gain, thyroid issues but not hypo or hyper, lethargy, inability to do simple math, elevated RBC, elevated WBC (neutrophils especially in last lab taken before it was figured out), insomnia followed by long periods of sleep, loss of appetite, CRP of 30, Homocyestine of 28, BP averaged 100/60 but HR was 88, etc.

    After two years of going round and round with no one able to explain what the heck was wrong, I was referred to an oncologist when my neutrophil count was through the roof.

    I KNEW I didn’t have cancer! But every doctor up until the referral was totally stumped (GP, OB/Gyn, RE, Cardiologist, ENT, Neuro, etc.) so they didn’t know what else to do!

    Three days before my appointment, I hit Dr. Google and pulled in every symptom and lab result and diagnosed myself…..I called my primary and requested the blood test that would prove I figured it out – a carboxyhemoglobin test – sure enough, my CO levels were at 20! I was and had been being slowly poisoned to death by carbon monoxide due to a low level chronic exposure in my house! Working from home exacerbated it because I wasn’t getting out of the exposure daily and the longer I was exposed, the less I got out of the house. No one even considered CO as the problem!

  • Lil A

    I was an unusual case when I was younger. At age 13, I was having really painful menstrual cramps. I had tried everything I could at home: avoiding salty foods before that time, dehydrating myself before and during that time (at the advice and prompting of my mom-probably not the smartest), and heating pads in that area. My first ObGyn I went to tried putting me on Vicodin for the menstrual cramps, so my mom took me to a different one. This ObGyn did a laparoscopy, and discovered something pretty unusual: my uterus was the size of a woman’s who had a child at age 14! He had asked me if I had a child, and I told him that I would have to have been the Virgin Mary to do so. He diagnosed me with having Adenomyosis with Endometriosis, and I was to start my long road of treatment. I tried regular birth control, which did nothing for my symptoms, not even regulating my highly irregular periods. I then was put onto Depo Lupron, which brought relief for a time, but I couldn’t be on it forever due to the loss of bone mass associated with it. After about a year, I had the choice of either treatment through birth control pills or IUD. I wanted birth control pills, but my mom forced me to get the IUD (which is something that probably should not be inserted in a virgin). Anyway, after insertion, I bled for a month straight, and I wanted to come back, but I was referred out to a fertility specialist. By sheer luck, my insurance agreed to cover treatment as long as it was only for Endometriosis and Adenomyosis and not for fertility. Anyway, I underwent a second laparoscopy and had Endometriosis removed from my abdominal cavity and organs and was put onto Norethindrone for a while. When it thinned out my uterine lining too much, I was then switched to regular birth control. I eventually went off of the birth control because I couldn’t afford it anymore, and here’s the kicker: I have been off of birth control and my cramps are not bad (managed by OTC’s whereas in the past it took a narcotic to bring relief) and my period is incredibly regular. I hate being an “interesting” patient.

    By the way, Endometriosis and Adenomyosis is usually diagnosed in women 30 and older. A diagnosis made in a teenager is pretty unusual.