Patients need answers. Doctors don’t always have them.

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  1. Mike Fraumeni

    Excellent read Alison. My own personal experience is with a diagnosis of “conversion disorder” which was applied very shortly after a few tests didn’t show anything “organic”, to use a popular term some medical professionals use or misuse. I won’t get into the specifics of a diagnosis of “conversion disorder” in my particular case, suffice it to say that I do know that some neurologists will use this diagnosis and tag a patient quite quickly when they simply don’t know what the neurological / neuropsychiatric symptoms represent and I find this disturbing, see link to peer-reviewed article below for implications for such a diagnosis. As you say, tell the person you don’t know what the problem is, to me this is a more genuine response from the physician and tell them they would like to follow you for a period of time to see how you are doing and any change in symptoms etc. To shuffle the patient off to psychiatry with a diagnosis of “conversion disorder” very quickly is, IMHO, not the correct action in many cases I believe.
    Problems with diagnosing Conversion Disorder in response to variable and unusual symptoms

    “Conversion Disorder (CD) is a diagnosis offered to explain signs and symptoms that do not correspond to recognized medical conditions. Pediatric patients with variable, vague, and multisystem complaints are at increased risk for being diagnosed with CD. Little is known about the impact of such a diagnosis. In making such diagnoses, it is likely that pediatric providers hope to encourage patients to access mental health care, but no basis exists to show that these diagnoses result in such access in any useful way. This article presents the case of a child with Ehlers-Danlos Syndrome, who had been previously (incorrectly) diagnosed with CD and referred for mental health care. It offers commentary based on interviews with other pediatric patients with similar experiences – conducted in collaboration with the Ehlers-Danlos National Foundation. These cases indicate that CD diagnoses can seriously undermine patients’ trust in doctors, and can create such defensiveness that it may interfere with (especially) patients’ abilities to engage with mental health services. Such interference is an important problem, if the diagnosis is accurate. But, in the (more likely) event that it is not accurate, this defensiveness can interfere with both important mental health care and further ongoing necessary medical care.”

    • sam

      Why would anyone accept a sham diagnosis such as “conversion disorder”? Even the physician who writes it on a chart is smart enough to realize it is bogus. Why he or she still jumps to the old standby ‘mental health’ issues is a sign of incompetence and cop out. This has become the egotistical diagnosis to protect an ego and get rid of a patient. It makes me angry that any qualified doctor uses this, since he is in NO position to be a shrink nor is a shrink in any position to be a physician. Many patients get put into this trap, everyone knows about it’s powers, most are bright enough to realize it’s a non diagnosis, simply made up by the DSM and we all know how accurate that bible is. Start trusting your own body, write rebuttals to your charts. Conversion disorder is the biggest lie to creep onto the physicians charts.

  2. Louise Kinross

    I like the idea of the anchor. What about saying ‘I don’t know the answer, but I will walk beside you through this, and support you to the best of my ability?’

    • sam

      Few doctors have the humility to want to do so. They believe that is involving themselves ’emotionally’ with the patient and after all, medical people have to distance themselves from patients as taught in school, lest you ‘burn out’. No one ever told them that the work of keeping a distance is exhausting and results in unrectified frustration which will fall onto the already vulnerable patient. We are seriously going backwards in healthcare and there are many reasons. I’m afraid the humanness is going away. The problem is, most doctors are very young and their emotional brains not yet developed when they enter med school and from there on it’s a slippery slope. I do feel sorry for doctors who lack insight into a patient’s narrative. Life is difficult for them also, but still no excuse to drag the sick down along with that.

  3. Rob Yallup

    Good read Alison. I am currently experiencing this frustration. It started in February of this year, with lower left quadrant pain and has snowballed into a myriad of ambiguous symptoms. Being quite young (39) also does not seem to help the situation, as I find you become “written off” a lot of times solely based on being younger, and that you are just another member of the general public with a “stomach bug” As your story states, I have visited GI, rheumatoid specialists and explored other avenues including osteopath and naturopathic options with little to no relief. The amount of time, resources and continuous immaculate blood counts is frustrating to say the least. As a patient you do expect some sort of answer or path to go down based on a diagnosis, to remedy the situation, however this isn’t always cut and dry. I understand it is obviously important to rule out anything sinister or life threatening and have done so with blood work and imaging tests, however I feel I have exhausted all of my avenues and at this point with no definitive path. I conduct my own troubleshooting and experiments with diet, supplements and exercises as well as conducting my own online research, however find it is flooded with a lot of conflicting information. In the end, hopefully with trial and error and time, I can overcome this.

  4. Leslie Ayre-Jaschke

    Physicians need to listen carefully and respectfully and work with the patient as an expert in their own symptoms/condition to find solutions (however imperfect and perhaps just “good enough”). Develop a trusting relationship. The patient often carries knowledge and wisdom that health care professionals don’t tap into enough. Ask the patient or family member if they have ideas or hunches about what might be wrong and work through those. It’s a team effort.

  5. Paul Anderson

    Thanks for directing our attention to this issue, Alison. It calls to mind for me the case of one patient who over the course of 23 years received 7 different diagnoses from various physicians as his illness progressed from one stage to the next. None of the diagnoses seems to have been an exact fit for the presenting symptoms at any given stage. In some cases it appears that certain symptoms that didn’t fit the proposed diagnosis were simply set aside as not significant. It makes me wonder whether some physicians in these situations, not knowing exactly what the particular illness might be and perhaps wishing to avoid having to say “I don’t know” to a worried patient, choose to offer a diagnosis that seems “close enough”.

  6. Carol

    I am an 82 year old widow. My husband died Feb. 2015. He was the type of individual who always wanted to seek out an answer for plaguing health problems.
    I, on the other hand, never did the same because I felt, probably no answers. I just put up with whatever was bothering me and treated it myself…..
    I think the answer is to NOT expect that EVERY sign and symptom can be treated and stay home. !!!!!!

  7. Rob Murray

    Lyme and tick-borne diseases are vastly underreported in Canada [multiply official figures by 12]. Lyme is the 2nd great imitator. The early symptoms are much more diverse than the much over-emphasized bull’s eye rash, fever etc. Many cases go undiagnosed or under-treated. This is a multi-system, multi-staged, life altering, life threatening disease that can mimic many others. All specialists have seen it but usually can’t put the clues together and the patient winds up with an inferior diagnosis of MUS, chronic fatigue, fibromyalgia or the disease is mistaken as MS. ALS, Parkinson’s etc. left untreated it goes on to produce are most expensive disease, Alzheimer’s. The North American tick maps line up very well with our complex neurologic disorders.

  8. Mike Fraumeni

    I believe one problem for physicians in Canada is that they can be restricted with ordering certain tests that have been deemed by clinical practice guideline developers that the provinces provides funds to (conflict of interest with the insurer providing funds for their guidelines?) to not have enough robust evidence for the test to be covered by the province. Inclusion criteria as to what studies are included in the development of a guideline can be quite arbitrary of course. I don’t think many patients understand the restrictions that physicians are under.

  9. Denise Connors

    Thank you for your honesty and reflective practice. I have no doubt that your openness, caring and compassion towards your patients is therapeutic in and of itself.
    I offer a couple of examples of team-based models in NS that treat patients such as you describe.
    Also highly recommend a book by Dr. Bessel van der Kolk: The Body Keeps the Score- Brain, Mind and Body in the Treatment of Trauma

  10. sam

    It is uplifting to see that you are human enough to realize that science is far from knowing and being able to cure or alleviate suffering. And where many doctors start directing their frustrations at the patient, or worse use the old “la belle indifference” (hysteria) which has now been coined into the word “psychiatric”, or “psychological overlay”. And it’s very convenient as a tool, simply to pencil that onto a chart to further frustrate and alienate a patient. The chart is mostly read and agreed with by other doctors, often because within a system, doctors are afraid to openly disagree with each other. Columbia University has a program for it’s med students called the “narrative medicine program”….only thing is, hopefully it takes root within the student’s future practice. There is a huge disconnect between doctors and patients, and it is laced with power and ego. I think most patients do not need hand holding. It is simple, if I say I have a headache, believe me.

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