יום חמישי, 2 באוקטובר 2014

Functional neurological disorder

As more than once, I have encountered this "diagnosis" as an ultimate explanation for at times life-endangering symptoms, I decided to try and understand where it stems from and what is its utility in the management of neurological diseases. This is at least my opinion:


A diagnosis based on ignorance and deception.

The Diagnostic and statistical manual of psychiatry (DSM-5) has a relatively new psychiatric entity-"functional neurological symptom disorder". In order to make this diagnosis it is enough that: 1.The patient suffers from disabling neurological symptoms. 2. The physician taking care of the patient (or the entire field of neurology) has no explanation for the patient's symptoms or those are inconsistent with the current knowledge and understanding. Even a patient with a known illness can have a functional disorder as well, if he/she has an unusual presentation or less common symptoms that do not fit with the knowledge and understanding of his or her physician regarding that illness. (Stone et al., 2012)

This is the only diagnosis I am aware of, which is based entirely on the inability of a physician or an entire field to find a reasonable explanation for a certain ailment or symptom. Had we taken this approach in medicine in general we would be left with very little knowledge and ability to treat numerous disease, which were all initially unexplained and required careful clinical observation and thought process of numerous physicians before they were understood. We would also dismiss numerous patients who have less common presentations of known diseases or ignore significant symptoms which are less typical, but caused by a serious underlying disorder or response to a commonly used treatment.

Unless there are major advances in the field of neurology up to 30% of patients attending neurological clinics around the world are going to satisfy those criteria1 and even more if patients with functional symptoms in addition to a known neurological illness are taken into account. This entity is no more than a disguise for the old term coined by Charcot and Freud-"Hysteria". Yet, as the presumed pathogenesis of this disorder has been seriously questioned,  emotional symptoms, behavioral abnormalities or personality traits are no longer required for this diagnosis in the DSM-52. Furthermore, this vague and ambiguous term, deliberately chosen to be more acceptable to patients, creates an atmosphere of deceit, even if unintentionally3.  

Numerous papers, case reports and books4-5 have warned against the use of this diagnosis. Eliot Slater has been repeatedly cited for his highly influential study in 19651 "The diagnosis of hysteria is a disguise for ignorance and a fertile source for clinical error. It is in fact not only a delusion but also a snare" But also others, 20 years later were aware of its pitfalls.  "Its dismissive potential coupled with its negative sociocultural connotations from which physicians are not exempt…offers an expedient solution for a diagnostically confusing patient and provides a release of negative emotions or even punitive actions under the guise of a respectful medical label"4. and "Hysteria lends itself most readily to the needs of physicians who have their concepts challenged and thus need to dismiss the "problem patient" for emotional needs of their own… sometimes with horrific results"

This diagnosis of a "functional disorder" indeed satisfies the emotional needs of physicians while encouraging ignorance and dismissal of at times seriously ill patients, as well as lack of curiosity to understand the currently unexplained.

 The deceptive nature of this diagnosis undermines the foundations of the physician-patient relationship which must be based on mutual trust and respect. It is ill-defined and therefore prone to numerous errors which could seriously endanger patient's well beings and lives. Even in patients with a known neurological illness, attributing significant symptoms to this entity can lead to underestimation of the severity of the illness, inadequate or partial treatment or inadequate assessment of response to treatment as well as ignoring significant side-effects of that treatment.

Even when an empathic relationship is created, there can be dire consequences to this approach if it leads to an illusion of adequate treatment for physician and patient alike. Just like in any other disease, empathy, dedication and care should come with and not instead of adequate medical treatment. Based, on this and my personal experience with quite a few patients with “functional symptoms” that upon more elaborate evaluation had numerous conditions such as a rare presentation of leukemia, a rare response to a commonly used medication and a rare presentation of myasthenia, I think that the medical community should seriously question the validity of this diagnosis.

I think it is OK to admit to ourselves and our patients that with all the significant advances in medicine there is still much that we do not know and need to study and learn, without creating a diagnosis or explanation for symptoms which in the long term create more harm than good for patients and the medical community alike.



1           Stone, J., Hewett, R., Carson, A., Warlow, C., and Sharpe, M., The 'disappearance' of hysteria: historical mystery or illusion?, J R Soc Med 101 (1), 12, (2008).
2           Stone, J., LaFrance, W. C., Jr., Brown, R., Spiegel, D., Levenson, J. L., and Sharpe, M., Conversion disorder: current problems and potential solutions for DSM-5, J Psychosom Res 71 (6), 369.
3           Kanaan, R. A., Armstrong, D., and Wessely, S. C., The function of 'functional': a mixed methods investigation, J Neurol Neurosurg Psychiatry 83 (3), 248.
4           Kutz, I., Garb, R., and Kuritzky, A., Diagnosis of misdiagnosis: on some of the origins and functions of psychophysical misdiagnosis, Gen Hosp Psychiatry 5 (3), 197, (1983).
5           Chloe G, K. A., My Imaginary illness: a journey into uncertainty and prejudice in medical diagnosis. (Cornell university press, Ithaca and London, 2010).
            .





יום שלישי, 30 בספטמבר 2014

then why write?

I never studied writing, other than scientific and medical writing. And like quite a few of my colleagues I wasn't overtly enthusiastic to write papers. I enjoyed much more the clinical work and research itself. But, when I myself became ill, I found writing to be the major form of communication available to me. I found myself writing in the world of patients, instead of working in the world of physicians. 

But, this writing although it helped me make some sense of the life that was forced upon me, was centered around my illness, not around my life or work. Those were only the background scenes. 
Having a rare and hard to diagnose and manage illness, forced me to put it in the center of my world much more than I would have wanted or thought I should. Much more than I would have advised any of my patients to do. 

Only, after I met a physician who was ready to take responsibility over my care, was I gradually able to put my illness aside and give it less place in my life. I was able to take a step backwards and appreciate the insights I have gained struggling with my illness and dealing with the way it was managed by quite a few of my colleagues. I realized that as a physician it was an invaluable learning experience, I  could incorporate into my life and professional life. 

Unfortunately, despite excellent supportive and symptomatic care, my illness took its course. My physician was reluctant to treat me, for reasons that are still obscure to me. I realized that if I want to save what still remained of my productive life I not only have to put this illness back into the center of my life, I have to do much more than that, I have to actively become my own physician. 

So, being nearly bed-ridden and requiring more and more frequent respiratory support, I found myself using my cell phone to search in the medical and scientific literature for anything that could possibly help. I sadly realized how little research there is on my illness- MuSK myasthenia or even on the more common form of it.





But, this only motivated me more to do something about it, not only for myself but for other patients suffering from rare forms of neurological diseases. Many of whom, as I have sadly realized over the years are not even seen as being "truly" ill, but rather suffering from a very ill-defined psychiatric illness called "functional neurological disorder".

With the help and support of my family and friends I fought to receive adequate treatment, just like I would have done for any of my patients. 

Alongside extensive research and using myself as a "guinea pig", gradually finding the optimal treatment and getting better, I also realized that I have to publish what I have learned for the sake of others. Some of it involves harsh criticism regarding the field of neurology and also medicine in general, but I hope it will be seen as productive criticism, which will eventually lead to improvement in the way diseases like the one I have are managed. 

It also involves appraisal of the advances of science and medicine, which when used wisely have the potential to improve and prolong the life of people who would otherwise be in a nursing home or even die from their illness.



This Blog will discuss academic issues, while my new blog will tell my story. 

A story about the nearly impossible struggle of one physician to lead a productive life (with) and also receive adequate treatment (for) a rare neuromuscular disease, that repeatedly refused to fit the "box".

For better and for worth-A story about struggling for better treatment, while leading a life of worth

http://forbetterandforworth.blogspot.co.il/


יום שישי, 11 בנובמבר 2011

what makes a physician....

Being a physician requires a combination of seemingly contradicting traits.
You need to be confident enough in what you think and do, and yet humble enough in front of your patient.
You need to constantly master an endlessly growing base of knowledge, yet realize that it is only the edge of the iceberg.
You need to do everything possible to avoid mistakes, yet be ready to honestly admit those that you do.
You need to fight for success, yet not be devastated by inevitable failure.
You need to be compassionate and understanding to every form of  human suffering, yet not succumb to the endless suffering of others you encounter each day.

30 years ago, when I first decided that I want to be a physician, I didn't realize any of that.
When I was asked in the interview, why I wanted to be a physician, I confidently (and naively) answered-"because I want to have the best tools to help other people". I did not know then that most of those tools are the edifice of character I will have to build within myself.

When one of my teachers said that in order to become a good physician you need to have some humbling experiences, I did not know that I will have the opportunity for the most humbling experiences one could ever ask for (not that I did, or wish such experiences on any one else).


Over the last 20 years,(which is a good part of my adult life, considering the fact that my 50th birthday was a few months ago) I have been a professional physician (board certified in internal medicine and hematology). I also had the opportunity to become a pretty professional patient (although quite likely I wouldn't have passed the boards on that one). I wrote  a few medical and scientific papers, but I was never a professional writer, and don't have any best-selling novel that I can boast about.

So, if you feel the best thing to do with this blog is to throw some eggs at it, just feel free to do so.
You can find a pretty good egg-throwing app. right here.

Or you can continue to read, and you can even do both.