Part 1: A background in medicine

“Preserving the Finest Traditions of My Calling”  ~  from the modern version of the Hippocratic Oath, ca. 1964

 

I have gone through a range of emotions since learning I had rheumatoid arthritis (RA), experiencing the five stages of grief while trying to cope with my life never being the same, before finally feeling empowered and adjusting my attitude towards my disease.

rheumatoid arthritis diagnosis story: doctor doesn't believe my symptoms are real

As a physician, part of this journey has also been having to rethink my role as a patient and how to interact with various providers. Here, I have fought a sort of hidden battle, one I have basically kept a secret from everyone except my closest confidants, as I am not in the habit of throwing fellow healthcare providers under the bus.

However, I have experienced what appears to be a bias towards physicians as patients receiving care from other physicians, with the bias not always in favor of the patient.

Moreover, this bias is further emphasized by the various invisible symptoms of RA, one of many difficulties those of us with rheumatologic disease have encountered during the course of our disorders, which make it especially difficult for patients, whether they be physicians or not, to convince healthcare providers that our symptoms are real.

 

 “Reverence My Master”  ~  from the original Hippocratic Oath, 5th c. BCE

 

It has taken me time to untangle my complex relationship with and feelings about physicians, especially those who have, as a group, served as providers for my own health issues over the years.  I was sick a lot as a child.  I mean, a *lot*.  I had severe allergies, recurrent bronchitis, pneumonia and ear infections.  I was never one to play with dolls, but I had a toy stethoscope and would line up my stuffed animals, ‘listening’ to their chests, then declaring in a very serious voice, even at the age of four, that they had pneumonia and would need an antibiotic.

I spent so much time in doctors’ offices, that I started to see that as my calling.  The physicians I remember from my childhood were such caring people, who had my complete respect and admiration, along with the tech who took more chest x-rays than I could count, the nurses who gave me allergy shots, and my mom, who was the office manager at the clinic where I received the majority of my care.  They were all part of the care team.  I also saw an ENT specialist for pulmonary testing, allergic skin prick tests, and had two ENT surgeries, all before I was five.  In all cases, no matter how much discomfort I went through, I always thanked them, or my mother did on my behalf.  Each was a kind of deity in my young little eyes.  They could ‘do no harm’… living up to their professional oaths.

I also remember my grandmother receiving the awful news she had a brain tumor when I was maybe six.  She had been falling from imbalance, her hearing was poor, and she had constant ringing.  Her tumor was benign, thankfully, an ‘acoustic neuroma’, or nerve behind the ear associated with hearing and balance, that had grown out of control.  She would be okay, but she had to have brain surgery in her early 50s to prevent further complications.

Brain surgery… those words carried a very heavy weight in my heart.  I recall the day of her surgery, around when I was eight or so, in the hospital across the street from the one for which I currently work, actually, spending several tense hours in the surgery waiting room to hear the news that it had gone successfully.  It did, amazingly, although she would never be able to hear from that ear again, which had to have been a significant blow to a music teacher (as much as RA was to her granddaughter, a physician and pianist).  Yet she continued to have faith in her doctors, and at least she would not have worsening deficits.  It turns out she continued to have balance issues, but she compensated well, and had no problems falling down after that.  It was truly amazing to me that a person would train for years to cut into another’s brain, and the patient could subsequently turn out relatively okay.

 

 “My Colleagues Will Be My Sisters and Brothers”  (… Or Grandfather?)  ~   from Physician’s Oath, Declaration of Geneva, ca. 1948

 

Did I mention my maternal grandfather was also a physician?  He, along with his two older cousins, served as the only physicians in the small town where my parents were born and raised.  They started a hospital in the community.  They built it with their own money, from plans my grandfather drafted himself, and with labor contracted by local community members in exchange for medical services they received.

As a general practitioner, a specialty that no longer exists, but from which the family medicine specialty was born, he had a clinic practice, delivered babies (in fact, my mother’s father delivered my own father), performed basic surgery assisting both his cousins as well as specialty surgeons who performed outreach services to this small community, took calls on his home phone through the night, and frequently made house-calls, even during severe winter weather.  He told of times, unable to get through huge snow drifts while calling on patients in rural areas, that he had to be met by a horse and wagon.  It is clear there was a level of dedication that I believe is not seen in clinicians today.  There were certainly many sacrifices he made, including his own marriage and limited involvement in raising his four daughters.

Probably as a direct result of this busy work life, he divorced my grandmother when my mom was 15, and forever after, their father-daughter relationship was constrained by the same absenteeism.  From the dwindling lack of understanding and familiarity, their conversation was stilted and halting, not at all as fluent as my mother spoke with anyone else, including strangers, or as easily as my grandpa could rattle off a joke, of which he knew hundreds by heart, and where his delivery was flawless, jovial, and good-natured.  I never saw him laugh so hard as when he exhibited the obvious thrill of seeing others laugh at his jokes.  It was not only in retelling a joke he memorized, either.  He was quick and witty with a new joke to fit the circumstances.

But he was not a grandpa you sit with for hours, listening to old stories.  He was private, quiet, an observer in the melee of social situations.  When I asked for details about parts of his life or advice as I prepared to graduate from medical school and move on to internship, his answers were brief and unsatisfying.  Now, particularly since I have gained considerable conversational skills having performed hundreds of medical interviews with often reluctant historians during the course of my patient encounters, I feel like I should have tried harder to have deeper conversations and learn more details about his life, satisfying my curiosity about those details he was disinclined to share.  But now he is gone.

I can speak of him now with fondness but he was always aloof with me, and he clearly was biased against women in medicine. He apparently saw that it was very hard for women to balance a family and a career, especially one akin to his.  He was not sexist, really, but I think he only knew of the one type of medical career, working many long hours, having few days off, and where personal sacrifice was the norm.

He met my grandmother in college, and it is possible he sensed that she could handle being alone.  Even then, she was already fiercely independent, but it would serve her well after the divorce.  She was the 2nd youngest of nine siblings, who moved from a small Midwestern town to attend school in a bustling ‘college town’.  This would have been in the early 1940s, when few women had careers outside the home.  Yet, when he entered into medical school, around 1942, it would have one of the highest percentages of women of a 5-year period before and after, as women were gaining independence and a new mindset.

My grandma left college early to marry him, but I am sure she got the first taste of the loneliness she might one day experience, because I know there were times during my years in training, attending the same medical school my grandfather attended and where both of our class photos can still be found on display, when my husband felt he had only a roommate who studied a lot.

I did not choose this profession because of my grandpa, but rather despite him… and his comments.  He was not particularly supportive, but neither did he try to influence my decision once it was made.  Nevertheless, I believe he saw how dedicated I was to the profession, and was reassured that my husband understood what he was getting himself into by choosing a future wife whose career would take priority for many years to come.  He lived past my graduation from medical school, residency, and the birth of my first two children.  He silently applauded me, I believe, for choosing to leave hospital medicine where I worked 60 hours per week, to be able to make my family a bigger priority, and to be home more.  He even visited my clinic once, and I like to believe he was pleased with me, perhaps even proud.

I left the hospital for a part-time primary care practice, working for an employer supportive of physicians’ decisions (usually women) to work less when their children are younger, and of physicians managing their own schedules.  This was only possible because brave physicians before me, especially those from my grandpa’s generation, who had taken a stand and decided they would not fall into the trap of being married to their jobs, or had gambled… on being able to handle the dual marriages of job and spouse, juggling 80-hour weeks and a family life… but had lost.  I think women, especially, were the voice of this new era, as they had come to realize early on, meandering the juxtaposed paths of career and motherhood, that they were more productive and compassionate when they were not as overworked.

 

“Dedicated to Loving People”  ~  from the 16th c. Japanese medical college, “Seventeen Rules of Enjuin”

There is a common personality type of those that enter into medical careers, and as a rule, we are caring and compassionate, enjoy science and are generally altruistic.  Perhaps it has changed some through the years, as personal achievement or scientific advancement became new goals, and financial drivers muddied the waters, but I would say, the majority cohort of doc simply wanted to help others.  Many of us come from a background of personal or family illness that inspired us to help others, and we dedicated ourselves to this mission, thus ‘paying it forward.’

My grandpa decided he wanted to be a doc when he was about 10, after he developed an infected blister from hours and hours practicing with his yo-yo, back when these were a brand new arrival to rural Kansas, and having it hit him over and over in the hand on its return.  The sense of awe he felt for that physician who relieved his pain was still evident even 75 years later, when I last remember him telling the story.  He was clearly inspired, and it must have shown through to his own patients.  He was great at what he did, because he had a real love of people.  Even today, although I have recently turned 40, and he has been gone more than five years and retired from practice for almost 30, former patients of his still make a point of telling me how much they loved and respected him.

Although most of us go into medicine with good intent and a sense of wanting to do some good in the world, somewhere along the way, many of us will become discouraged that we are being disparaged, our intentions misunderstood, and feeling the weight of collective stressors that make us cynical.  It is more and more common to find physicians retiring early or transitioning to non-clinical careers.  Changing times are the norm, and anyone who gets too wrapped up in how things used to be, gets passed by or swept over, particularly in medicine, which is now a multi-trillion dollar industry, and the many billions spent on research and development inevitably necessitate staying abreast of it all in order to survive.

Discovery of antibiotics, development of vaccines, advances in radiology, new surgical techniques, and non-surgical treatments for internal disease are all innovation I think everyone would agree have allowed the healing arts to make leaps and bounds of a positive manner. Indeed, various movements in medicine have led to sweeping change, but perhaps not always for the better. Then there are those that have been clearly detrimental or at least debatable as regards positive outcomes.  ‘The New Deal’ and the development of Medicare and Medicaid, antibiotic over-prescribing, treatments that lead to outcomes worse than the disease, insurance reform and HMOs, pre-existing condition clauses, abortion… these on the whole are controversial or have led to poor outcomes.

My grandpa retired in the midst of the rise of HMOs and reduced physician payments, when insurance companies began to dictate the treatments, rather than leaving this decision to the physician in concert with the patient.  He opposed these changes because he fundamentally disagreed with the direction the practice of medicine was moving, being a ‘country doc’ used to establishing true and lasting bonds with those he treated.

Although the manner in which we are now practicing medicine has changed significantly, I happen to maintain that same approach and agree with his philosophy in that regard.  The relationship between physician and patient is not only necessary, but I believe, the most important tool we have.  Really listening, taking an interest in the *person*, and not just their condition, working with them on solving the problem, and doing everything possible to make or keep a patient well are what drive many of us still.  Spending those extra moments to comfort someone who is distressed by an event, health-related or not, is one of the many aspects of my job I find personally gratifying.

 

Part 2: The frustrating road to RA diagnosis

 

“Meet Everyone on Equal Grounds”  ~  from the 5th c. Chinese text, “On the Absolute Sincerity of Great Physicians”

 

Having come from a background where physicians were never questioned, always respected, and placed on a pedestal, I am, as one might guess, invested in my relationships with other docs, both as colleagues as well as providers for my own issues. Granted, as a physician I no longer approach my visits with the same awe of their knowledge or healing skills, but I respect the training that got them to this point and value their opinions.  In return, I expect that I will be treated similarly, given a little credit for my knowing not only about certain disorders, as well as what course my disease should take and what the treatment will entail, but also to have the ability to recognize certain clinical signs and symptoms in myself and to have an opinion on the approach or selected treatment.

So, it comes as a surprise to me when I am not treated that way, and my own assessments and thoughts are not given some merit.  Not that I expect any preferential treatment, but it never ceases to amaze me how I could feel so frustrated in my role as a patient, even when I understand the process of diagnosis and workup, the steps to take to find an appropriate therapy, how one must jump through certain hoops before escalating to the next step, and most surprising, the errors that are commonly made.

When I began having RA symptoms, it presented with a migratory polyarthritis, where I would have symmetric joint swelling, in one set at a time, each for a few days before moving on to the next pair of joints.  First my elbows, then ankles, shoulders, wrists, hands before it then settled into all of those.  Despite being slightly taller than average at 5’7” and my weight greater than recommended, I am not what I would consider to be ‘big-boned’.  Actually, my joints were smaller than average for my height, and with bony prominence, particularly at the wrists, which were previously tiny with a prominent ulnar styloid, the arm bone on the same side of the wrist as the little finger.  Also, my hands are small for my size.  As an example, I am the only one to wear a size ‘small’ glove in my office other than my 5-foot primary care doc, who is maybe a size four.

My first rheumatologist, a colleague of mine whom I generally respect, and to whom I refer my own patients, sometimes seemed to forget that I was also a physician.  Several years prior to my RA onset, I was in his office with knee pain, which I have had since I was a teen, but in this instance, was also having pain in my finger tendons.  He said this was a tendon strain, and why he did not think it was one of several other common issues, such as trigger finger.  He then asked if I knew what that was?  I sort of stammered back yes, that, I am Jenny Scheid, *Doctor* Scheid.  It was an odd exchange. Of course I know about trigger finger. I felt like a tool for becoming flustered and putting on the haughty air of a conceited physician or forgotten celebrity, I don’t know which, upset at the lack of recognition and notoriety.

 

“You Should Not Speak Ill of Other Physicians”  ~  from the 16th c. Japanese medical college, “Seventeen Rules of Enjuin”

 

I really enjoy rheumatology, and even had some experience in this field, having done a rheumatology preceptorship in the summer between my 1st and 2nd year of med school.  We delved pretty deeply into making a learning experience of the clinical environment, with model RA patients as trainers for our musculoskeletal exam, a free primer of rheumatologic disease to study in detail, quizzes, attending rounds and clinic settings, becoming part of the team for a period, outperforming more senior medical students because of our extra training, radiology rounds with a subspecialist in musculoskeletal imaging, who had obvious passion and a keen eye for his chosen emphasis, despite his always-smudged coke-bottle glasses, and finally, being sponsored to attend the annual specialty conference in Boston, just as biologics were hitting the market.

When I visited my first rheumatologist about the migratory joint pains and swelling, warmth I could feel from the ‘inside’ but could not, myself, detect at the skin per my own exam, I also mentioned having an ergonomic assessment for preceding hand pain, which I attributed to extra computer work I had been doing.  He wanted to discount my joint symptoms as overuse, although how that pertains, to shoulder, elbow or ankle pain and swelling, I’ll never know.  Additionally, I discussed tendonitis-type symptoms (which can coincide with RA or be a pre-clinical symptom before onset of joint pain) and more long-standing neuropathy/neuritis in my 4th/5th fingers, as well as fibromyalgia-type trigger-point pain, for both of which I had started on Lyrica a couple years prior. During this visit, my wandering inflammatory change was also in transition between joints, from resolution of swelling in one location to developing symptoms in another.

My rheumatologist seemed to dismiss my clinical concerns.  To my surprise, he was not even going to do any testing until I mentioned my family history of RA and JRA, and reminded him of my long-term issues with knee pain and hypermobility that we had discussed in previous visits.

That was when he seemed to snap to attention and he said something to the effect that, well, now that is the kind of thing he needs to know, and why did I not mention that earlier? So, he ordered some lab, which was hypo-impressive even to me.  RF negative, CRP and ESR were normal.  Only thing that showed up was mildly positive ANA, but the reflex testing for this was negative, which essentially ruled out 80% of rheumatologic disorders.  Negative RNP meant I did not have mixed connective tissue disease; negative DNA antibodies was fairly sensitive for ruling out lupus; and negative anti-Ro and -La meant I probably did not have Sjogren’s disease (different from Sjogren’s syndrome).  It was still possible this was a reactive-type arthritis, typically seen after one of several viral illnesses, which I did have the week before this all began.

He started me on NSAIDs and Plaquenil, which will be effective and often adequate for treating mild rheumatologic disease. Although, that would not be the case with me; mine was more moderate to severe. However, anyone who has been on Plaquenil knows it takes months to start working, like 4-6 months.  So, I suffered, A LOT, and within a week, developed bilateral hand and some mild facial numbness.

I called my rheumatologist but he was not concerned.  I asked to see a neurologist.   The neuro was polite, but felt it was nothing serious.  It was obvious to me the rheumatologist and neurologist had talked, probably about how I anxious and uptight I had been.  EMG and MRI of my brain were normal.  The neurologist did mention autoimmune neuritis, and that he would need a skin biopsy to confirm it, but felt it might be too early and/or mild to even show on tissue section.  He did reassure me that it was very unlikely caused by the Plaquenil.  So, I continued taking it.  From about the 4- to 8-week mark it caused migraines, 2-3 per week, but these, too, resolved as quickly as they developed.  The Plaquenil eventually helped slightly after 4 to 5 months, and he seemed satisfied to leave the treatment there, although I was missing work 2-3 times per month and continuing business as usual led to severe pain and tears at night.

My rheumatologist had diagnosed UCTD or undifferentiated connective tissue disorder.  That diagnosis felt and sounded very unsatisfying, but in my readings, I found most cases eventually differentiate into lupus or RA, and the remainder into other autoimmune disorders or will go into remission.  I asked about other disease-modifying drugs and biologics, but he had not felt my clinical exam warranted this escalation of therapy.  He said biologics were contraindicated in lupus, if that is what this turned out to be.

I was not getting from him any sense of urgency on wanting to test any further than some initial labs, and he did not want to get any imaging of the large middle knuckle, which was the most painful of all my small joints, or prescribe anything else. Despite being ‘crippling’ and clearly swollen compared to my baseline, let alone by my exam, which to me felt like the joint was “boggy” or contained some fluid, he claimed to see no problems with it, and doubted that it represented synovitis (the joint capsule swelling typical of RA).  I eventually obtained imaging and now have subsequent MRI proof that there is some surrounding fluid suggestive of synovitis (although the study was done without contrast, which I now know highlights inflammatory change- another part of my situational screw-up saga) and an erosion in that spot, evidence of recent or current inflammation.  This spot also lit up like a lightbulb on bone scan, virtual proof of inflammatory change.

Between the joint pain, stiffness, and swelling- flared by weather or excessive activities-  and hand tendonitis- with exacerbations related to the amount of computer or manual work I did, I was really miserable, barely functional, and struggling to get out of bed many days.  I eventually decided to seek a second opinion, which my rheumatologist supported without resistance.

I wondered if maybe he felt it was too awkward for me to be outwardly distrustful and dissatisfied, or he did not feel able to give me his straightforward opinion, which I can only assume was that I was making mountains of molehills.  Why he would not consider my opinion or be comfortable with my assessment of the clinical situation, still makes me angry.  I would not just suddenly begin to complain of these things, after having none of these symptoms despite him knowing me for several years.   Would this be how he would treat other patients, or was he biased against me just because of my profession?  Was he trying to minimize the severity to be reassuring, or did he feel I was misusing my clinical knowledge to fabricate a diagnosis?

When I saw a new rheumatologist and received the diagnosis of RA, I finally felt validated. Sure, the usual inflammatory markers and antibodies were normal, but the ANA was positive.  The diagnosis was based on the newest iteration of the diagnostic criteria, primarily from the symptoms, since plain xrays failed to show any erosions at that early stage.  Likewise, my exam was minimally abnormal at first, similar to those times whenever I am going through a mild period of improvement, but I knew there was seriously something more.  I knew how I felt.

Still, there were doubters. My primary care physician seemed skeptical, mainly based on lack of early joint destruction or deformity and with clinical exam proportionately minimal compared to clinical symptoms.  It was so frustrating. Few people believed my account since I had no proof that I felt run-down, that my joints were achy and stiff, that there was warmth I could feel inside the joint, even though I admitted my own clinical exam was unable to objectively feel the warmth early on.

Now I do feel warmth externally, and received validation during OT, when my skin temperature over sore joints was checked against my background temp in a neutral area.  As the symptoms have progressed, this has become much more obvious, even to my doubting primary care provider.  I have requested numerous interventions, like physical or occupational therapy, MRIs, FMLA forms, various pain medications and letters to justify my anticipated accommodations needed for upcoming board certification exams.  These were completed without any complaints as far as I knew.

However, now I suspect there was doubt all along, for when I mentioned that I was having problems finding a workflow that worked for me, and that my rheumatologist had talked about escalating to Rituxan, my primary care physician actually scoffed at hearing that.  Of course, if I mention my MRI exam of my hand was done without contrast necessary to detect early RA changes despite it being ordered for diagnosis of arthritis, and that we do not have a specialist in musculoskeletal radiology at our facility, and the MRI was read as essentially normal, it is a little more clear where this skepticism originated.  Further, my primary care had wanted me to be on fewer medications before this all started, and this did not change significantly after my RA was diagnosed.

With all the symptoms I encountered, it was pretty clear to me that I was not going to be able to keep up with my current activities, even after making adjustments and cuts to my schedule, dropping out of committee work little-by-little, and giving up playing piano or delegating many of the duties I had been responsible for at home.

One of the hospital administrators, a retired rheumatologist, suggested I pursue a Mayo e-consult, where a Mayo physician will obtain your records and look over everything and give an opinion on diagnosis or treatment. This is not available everywhere, but if your physician or institution happens to be affiliated with Mayo in accordance with a partnership agreement, they will perform this for free.  Our hospital had such an agreement, and I was excited to take advantage.  Not much came of it other than the MRI I mentioned of my hand, showing possible evidence of inflammation that was not called on the report from our radiology department.  But now, suddenly, my PCP seems to be less a skeptic and more empathetic.

I tried to manage my time better, keep up with my busy schedule without driving myself crazy and crashing each night in a pile of pain. Then just a few months ago, I stayed home a couple days with nausea and abdominal discomfort during a period when my children had similar symptoms and a GI bug was making the rounds through their school.  I tried to return to work when the kids were well enough, but I canceled halfway through my day due to worsening symptoms.  That night, I had crazy, severe upper abdominal and back pain, although I had eaten little that day, and it proceeded to get worse through the night.  I was writhing on the couch, grunting, sweating, unable to find a comfortable position, and over the course of 10 hours, took four times my usual bedtime dose of pain medication without any appreciable relief of my pain.  Long story short, it ended up being a pretty bad case of appendicitis, only mine was high in the back rather than low in the front. There was also a lot of surrounding inflammation, and the surgeon told me it was more extensive than he expected, and that my appendix was bordering on rupturing.  My rheumatologist thought the severity of this was likely related to use of a biologic and my decreased immunity.

The pain medication I was given in the hospital provided minimal relief, which I am certain was partly because I take a very modest dose of narcotic medication most nights just to get a decent night’s sleep and not repeatedly wake from aches and pains.  Because of this, I had a slight narcotic tolerance compared to the average person, but even as I mentioned that, requests for a higher dose fell on deaf ears.  It is ludicrous that I had to sit and suffer very high levels of pain post-op.

I also was unable to empty my bladder, and I requested to be catheterized three separate times.  The first two were quick, temporary catheters just to drain the bladder, but were not the kind that is left in place. However, after I tried every method I knew to *help* induce bladder-emptying, having not only the medical acumen, but also the experience of several previous bouts of urinary retention, I knew from experience, even before the last time my bladder was scanned, I had almost a liter of urine, which is about the highest volume a bladder can hold.  So, I had to be sent home with a catheter in place and a ‘leg bag’ to collect it.

I could have told them this would happen, but after my pain medication request was shot down, I thought to myself, “Why bother?”  If everyone else sees fit to ignore my judgment and knowledge of medicine, not to mention my own prior experiences of being catheterized for narcotic-induced urinary retention with the birth of my first child, it felt futile to continue to tell them what and why I anticipated a particular outcome.  I started to doubt myself, there, for a time.  What good *is* my knowledge and experience, if I cannot even be trusted to use it to evaluate myself. This was a 180-degree different experience from other docs I have received  care from and who directed the nursing staff to just give me whatever I want.

 

Part 3: Physician distrust

 

“I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon’s knife or the chemist’s drug”  ~  from the modern version of the Hippocratic Oath

 

The largely invisible symptoms of RA have made a difficult task of convincing other healthcare providers that I am not dreaming this up, that my symptoms are real. Having seronegative disease on top of it, and inconsistent symptoms and signs of my disease, compounded this doubt.

My initial rheumatologist was unwilling to re-evaluate his initial opinions, or to commit to any further diagnostic workup, and although a true diagnosis, he was only able to get as far as using a catch-all term of undifferentiated connective tissue disorder, but I continued to feel worse, and sought another opinion.

Simply based on history, the referral specialist made the leap to RA, although using diagnostic testing currently available, there was not enough to support this based on lab and imaging alone.  I know it happens all the time, where a flare occurs, I make an appointment to be seen, but then before I can get in, the joint swelling resolves, the warmth that was externally mild to begin, although it may have been internally quite uncomfortable, has dissipated, and my fatigue and sleep disturbance were never visible anyhow.  The inflammatory nerve and tendon pain I had also, was not supported by testing, but again, there are limitations to our current tests, where early disease can be hard to spot radiographically.

Having caught the disease in its early stages before developing overt joint erosions, the negative xrays, combined with MRI of my hand meant to help clarify there was early tendon sheath inflammation that generally precedes joint destruction, was ordered without contrast and was thus non-diagnostic, just as two other MRIs in the last year for other orthopedic issues have been.  My primary care was skeptical and clearly disagreeing with the conclusions of the second physician, until an over-read of my MRI through a tertiary referral center, and an ‘e-consult’ concluded I did have inflammatory arthritis, but just that RA would not be definitively diagnosed without further supportive diagnostic testing.

Having worked closely with my primary care physician for eight years, I was surprised, irritated, and offended that the unspoken message I received was that this does not seem real, and while not refusing any testing outright, the facial expressions and tone of our emails gave away her opinion as clearly as if she had said it out loud.

Perhaps it is because of my background that I do feel this irritation, because I know it could and should run more smoothly at times, because I know enough to recognize my side effects and have a pretty good guess about what is going on when I develop a new symptom, that I find the entire role of being a patient, rather than a provider, to be aggravating.  I am not the only one, either.  A colleague and friend of mine was recently hospitalized for an autoimmune anemia, and she was getting symptoms of low blood pressure when standing, losing her balance, breaking a sweat, and even scarier, partial loss of her visual fields.  She asked for a liter of saline before being sent home, but her request was refused by the hospitalist, who felt the symptoms were more from the anemia, and that diluting those blood counts further with IV fluids, her symptoms may worsen.  Thankfully, she appealed to the hematologist, and the hematology consultant concurred and ended up ordering this for her when the hospital doctor refused.

So, perhaps the ordering fiasco each of these times occurred from mistakes of ordering staff, related to misinterpreting the notes that were made on the order.  This happens. However, what about when it is obvious there are biases against a medical professional in the role of patient on the part of another provider?  Then, it is fairly obvious that the provider/patient is not being taken seriously.  Perhaps the provider believes the patient to be overly concerned about a finding or symptom that will more than likely be found to be a minor condition, or what we in medicine call ‘hyper-vigilant’.  Those patients do exist, and I will not say they are never physicians themselves, but generally are often someone with a medical background, typically with less training than a physician.

Finally, there is a common occurrence, called the medical student syndrome, and typically seen in first-year medical students when studying a new disorder, when they begin to believe they suffer from that condition.  We were warned about that when we started school, and given a bit of reassurance that it is natural to develop empathy for patients, but usually the least specific symptoms, such as fatigue or insomnia, are the ones that anyone could say they have suffered at one point.  I believe this phenomenon is generalizable across medical specialties and various levels of training, and could even be an extension of the perseveration (recurrent and excessive thoughts about a subject) many patients have when they know of someone with a new diagnosis of diabetes, cancer, or infectious illness and believe they have something similar. Cardiac nurses might experience fatigue while exercising and are more likely concerned they have a heart condition than a thyroid disorder, and a patient with a friend who was recently diagnosed with metastatic cancer starts to notice every tiny lump and bump or irregularity they never realized were there before and fears they also have diffuse cancer. These are actual examples from my own practice.

Admittedly, I cannot count the number of times I said to my husband during med school, “Maybe I have that!” Then, surprisingly, I actually did start to put it together that I had all the symptoms of hypothyroidism, and detected a goiter as I was learning about that.  So, the situation is not always completely unfounded, as this was how I learned I had hypothyroidism.  Even doctors (or med students) get diseases sometimes, and even cardiac nurses can have heart disease.  It is not out of the realm of possibility that I actually know that I have this or that disorder, and I’m piling up more and more of these everyday it seems.  As patients are often heard saying, although honestly, it drives me crazy, “I know my own body, and I know something is not right.” In some cases, they are right… just imagine if everyone were being their own best advocate, and actually had the insight into what was clearly wrong.  That would make my job so much easier.  This is why I still find this process so infuriating, as I actually *do* have the insight, and I actually *might* know what can be wrong.  Why, then, can other providers not trust me about myself?  I’d appreciate a little credit now and then.

Perhaps I am scared about what that means for all my years of training, my family’s security, and having worked so hard for a professional calling that ultimately has let me down.  It is just about all I can do to stay in the fight.  Maybe that’s dramatic, and maybe some would say I don’t know anything about hard work if all this is getting me upset.  Perhaps those things are true.  My continued struggle in just taking care of myself is plenty enough to deal with some days, without having to also worry about whether I am doing a good enough job for all these other lives for which I am responsible.  It’s more than a little ironic and a big disappointment that my own profession, and the body I rely on to perform it, have betrayed me.

 

The continued story of my (rheumatoid?) arthritis

So, while this this tale could continue in perpetuity, I will say now, that even my RA diagnosis is in question again.  As I improved some with oral medications but was still having flares and missing work, I started a biologic, but a 3-month trial was not yet effective to the point I was satisfied with the outcome.  So, I switched to another, then another.  After three separate biologics, there was just enough concern from my rheumatologist that perhaps these were not working because I had something else that looked like RA.  We do have a family history of psoriatic arthritis, and maybe this was it instead.  He was going to put me on rituximab, but noted that if that did not work, perhaps we should repeat my hand MRI with contrast for a definitive answer.  However, given the risks of this medication being so much more than the others, I wanted that confirmation first.  So, back to the drawing board… I’m having another MRI in June.  Perhaps this will put my questionable diagnosis to rest, then I can find a treatment that works, whatever my eventual diagnosis will be.  As anyone with inflammatory arthritis knows, you just want to feel better, and I do not really care what he calls it.

This experience having RA or whatever it is, has taken away so much it would be impossible to list here, but I have to say it has given me a perspective I never thought I would have.

I know it has given me more sympathy, more empathy, more appreciation for all the wonderful people in my life, and it has forced me to slow down, pace myself, take life a little less seriously.

It has helped me to love my children more, love my husband more, and give myself permission to be less than perfect.

My account of my diagnosis story has such a deep past, steeped in tradition, with underpinnings of the greatness of the medical traditions from around the globe and brings my preconceived notions about my feelings towards the physicians in my life around full circle.

I stand in awe of them, once from fascination and respect, now with a little cynicism thrown in, but still I know that they are people too, and nobody is perfect.

This account has taken me more than two very tough months to write, being everything I am to so many people in my life– my three kids and their teachers/coaches, my parents, in-laws, husband, hospital administrators, nursing staff, and my 1300 patients…  that’s more than a lot of us have relying on our wellness– pulled in every direction, feeling less of a mom, wife, daughter, friend, and physician than I have ever been, riding the mammoth waves of life’s busy moments, and trying to not let anything slip too much.

The pain I have experienced recently has kept me from doing much of anything some nights, after typing my day away while listening to other people’s problems and trying to figure out how to solve them.  However, this was important to me to get right, as I knew there was a story here to be told, but frankly had to find my own way through to the other side.  It has been cathartic, poignant in places, maybe, and it brings me to some resolution I was unaware I needed.  I hope by some token it helps the reader in some way, if nothing other than coming to realize that while yes, you may be frustrated at the medical system in general or your doctor in particular, we are all only human and trying to do our best.

 

Read more diagnosis stories from other CreakyJoints bloggers.