When its “All in Your Head”

January 18, 2016 | Posted in: Chronic Illness and anxiety, Chronic Illness and Diagnosis, Physicians

You’ve been battling soul-crushing symptoms for months now. Desperate for relief, and terrified of the answers you’ve somehow managed to wait the agonizing three months it’s taken to see the specialist your primary care physician referred you to. After a battery of painful, expensive and frightening tests, it’s time to go over the results. The specialist looks you in the eye and says, essentially, “It’s all in your head.” Maybe he says your symptoms are psychosomatic, caused by stress and anxiety or maybe he diagnoses you with a conversion disorder. Ever happened to you?

If you managed to get through the remainder of the appointment without throwing inanimate objects or hurling curse words, today I’d like to congratulate you.

With his permission, I’d like to share a portion of a blog written by prominent Lyme physician, Dr. Jaller of Rockville, Maryland. Here, he talks about a patient who comes to him previously diagnosed with a conversion disorder. I think you’ll find it very interesting.

Conversion Reaction Disorder

Have you ever been told you may 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 six months ago. Yesterday, they returned for our second appointment.

This patient had been suffering through severe weakness for five years. At age 12, after contracting 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 specialists 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 psychiatrists found no evidence of psychiatric pathology. At least one suggested the medical doctors had missed something. For five 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 wheelchair; 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 many neurologists, 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 notes to everyone and it was only because of my notes 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 was 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 if used, antibiotics with neuroprotective effects should be chosen. (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.  Conversion 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 a 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 a specialist. Primary care doctors are trained to follow guidelines, not to think. Specialists 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.

You can read more from Dr. Jaller at http://lymemd.blogspot.com

 

Feature photo courtesy of pexels.com

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