Have you ever been told you have a conversion disorder?A cursory review of basic medical literature implies that conversion reactions are very common. Are they? Generally, this term refers to patients presenting with neurological symptoms not due to a physical or organic cause but rather a psychological one. Usually these events occur in relationship to a stressful event triggering the response. Symptoms are generally short lived. The diagnosis is only considered when all possible physical/medical explanations have been excluded.(Have they?)
A concept which frequently explains how doctors think is anchoring. Once a diagnosis, such as conversion reaction is on a patient’s chart subsequent doctors new to the patient are quick to draw the same conclusions. This is a very dangerous practice, called a heuristic error.
The case of a patient I saw yesterday made my blood boil. I met a very nice 17 year old male and his parents 6 months ago. Yesterday they returned for our second appointment.
This patient had been suffering with severe weakness for 5 years ago. At age 12, after suffering with a febrile infectious illness he developed an acute onset of weakness which affected his lower and then upper limbs. He was diagnosed with strep throat and prescribed a course of amoxicillin which led to a diffuse macular rash. As you may know, rash with amoxicillin after “strep throat” frequently means the diagnosis was mono, not strep.The young man was seen by a wide array of specialist at the best centers: Hopkins, Children’s etc. Complete neurological testing was performed, including an NCV/EMG. Nothing could be found. He was diagnosed with a conversion reaction. Two psychiatrist found no evidence of psychiatric pathology. At least one suggested the medical doctors had missed something. For 5 long years he was passed around to a bevy of primary care doctors and specialist. The diagnosis was always the same: conversion reaction.
At the urging of a friend he was referred to me. He comes from a normal, well-functioning nuclear family. (A rarity). There had been no trauma or emotional stress. He experienced weakness which came and went, involving all four limbs but mostly legs. He was a straight A student and showed no signs of maladjustment or depression. At times he was in a wheel chair; other times he managed with a cane. He had few other symptoms but did complain of some migratory joint pains unexplained by a rheumatologist.When I examined him I found evidence of diffuse muscle weakness without sensory signs or loss. Deep tendon reflexes, although diminished, were present. The exam was not what I expected but I thought he had a form of pure motor CIDP. Contrary to the view of most neurologist, CIDP is a clinical diagnosis and cannot be excluded due to the presence of deep tendon reflexes.
I always go back to the maximum I was taught so many years ago: diagnosis is 85% patient history, 10% physical exam and 5% lab.The EMG had not been repeated in 5 years.
With my consult notes in tow, new doctors took another look at him. Repeat NCV/EMG showed changes typical of those seen in chronic demyelinating peripheral motor neuropathy. A new neurologist was now recommending IVIG, possibly plasmapheresis (at Kaiser). The family told me that they showed my consultation note to everyone and it was only because of my note doctors took a new look.His Lyme testing was borderline/negative. Lyme had not been excluded, further testing was needed. I told the family that even if Lyme testing is positive IVIG should be started first because it lowers the risk of neurological Herxheimer reactions which have the potential to make things worse. I made a note that the if used, antibiotics with neuroprotective effects should be used. (doxy, Rocephin).
In all likelihood mono triggered Guillaume Barré syndrome which is chronic and is very similar to CIDP.I took a fresh look at this patient. There was no reason for a conversion reaction. Conversions reactions should be brief but his weakness had not changed for 5 years. The illness began in the aftermath of a viral syndrome, a known trigger for GBS. EMGs are frequently negative early in neurological disease and need to be repeated sequentially. Psychiatrists thought it was something physical. All of the doctors and experts who saw him made the same heuristic anchoring error and all jumped to the easy diagnosis already provided to them.
Lyme patients are told they have conversion disorders every day. This is vaguely understandable because “they” say Lyme doesn’t exist. (In the way we know it).What is the excuse here? The thinking medical detective is a thing of the past: obsolete. Patients get 5 minutes with a primary care doctor who is quick to shuffle them off to specialist. Primary care doctors are trained to follow guidelines, not to think. Specialist view patients through a narrow myopic lens with no eye to the larger picture.
I wish such episodes are rare, but we all know they are not.As a patient, if you do not think you have conversion reaction/psychiatric problem/psychosomatic problem/Munchausen’s disease or fictitious disorder (as diagnosed) you must be your own advocate. When doctor after doctor after doctor gives you the same wrong diagnosis it is easy to doubt yourself and question your own sanity. Listen to your gut. You are navigating through a system which is broken.
Thanks so much for all that you do.
Dear Dr. I was scanning your posts and saw this. I have an article written by a family - or essay rather - and it describes their nightmare fighting a conversion disorder diagnosis After years of anti psychotics and roads going nowhere...the magical recovery came with azithromycin and mepron, the specific dosing was not related, but it was through the efforts of a LLMD. That is for babesia I believe - they never said what their dd had. However, after years of being sick that is what is getting her out of her nightmare.
"You are navigating through a system that is broken" Can I get a witness!?
Would it be okay to link this to my blog for folks struggling with chronic illness? Unfortunately, this is the song of my people. And too many are told, it's all in their head. The words "conversion disorder" still make me want to hurl.
It took me a year and a half to get a proper diagnosis of Lyme Disease. The whole ordeal started with a trip to med-express; by the time it was over, I had seen a gastroenterologist, two neurologists, an endocrinologist, a dietician, a dermatologist, and had literally dozens of visits with my PCP. To my PCP's credit, she agreed to run practically every test I had asked for, but there was no real investigation except what I was able to do on my own time. There were many red herrings that I chased for months. The specialists were either arrogant to a fault or focusing on one specific thing, and my and others often suggested that my problems were psychosomatic. Now I am wondering if my difficulty in getting taken seriously was because of I was pegged from the beginning on my chart.
I was tested for Lyme disease three times (Elisa only - false negatives) initially at different points by different doctors. They were at least looking or agreeing with me that it was worth looking at; unfortunately, there is so much ignorance around how to diagnose the disease, as this blog describes. In retrospect, due to my symptoms and the fact that I live in a Lyme endemic area it should have been obvious. My PCP once said to me "it can't be Lyme because you don't have swollen knees."
Up against that kind of ignorance, one really does have to be their own advocate. I researched whenever I had time and spent hours learning basic medical stuff. Still, it was a bit lucky at the end that I finally got a western blot sent to a proper lab and began receiving treatment. At one point, my symptoms did lessen, and I was thinking that perhaps the doctors were right...maybe it was in my head. Unfortunately not!
Anyway I guess my point is that in this day when anyone with a pc can do research, it is imperative that patients take the initiative and go into their appointments armed with the right knowledge. Medical info isn't as esoteric as it used to be so learn everything: symptoms & diseases, tests, side effects of drugs, etc. It will help a great deal and is absolutely essential when you have some mystery disease no one else is picking up. You can't depend on your doctors (even conscientious ones) to do it all; they have too many patients. Do your due diligence and Do trust your instincts when they tell you something is wrong.
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