Medically Uncommon Often Means Disregarded

In ER, unmonitored and no testing done as a severe neuromuscular attack finally subsides. Photo taken October 13, 2015, age 12.

What a patient hears is, "You are just making this up to get attention." A parent’s interpretation is, "Doctors aren’t going to keep looking for the real cause." The diagnosis which triggers these reactions is Psychosomatic Conversion Disorder.

This diagnosis is considered a dissociative mental disorder, or “psychological reaction(s) to stressful circumstances that are neither intentional nor planned”, according to Emergency Medicine Clinical Essentials. It is based purely on a doctor’s judgement call, requiring no substantiated psychological or medical proof, but generally accepted as reality due to “group think” throughout a significant portion of the current medical community.

It is undeniable that stress exacerbates medical symptoms, and this is physiologically understandable. However, the assumption that there is no physical root cause simply because a cause is not readily obvious, and that the individual is simply manifesting fake symptoms because they experienced stress in the past takes that ideal absurdly too far.

Historically, this “disorder” was referred to as Hysteria. This term is oddly associated with the Salem witch trials of 1692, which were initially triggered by preteen girls exhibiting symptoms that, today, sound suspiciously like they may have resulted from a virus that attacked the nervous system. However, with no identifiable medical explanation at the time, the girls claimed that the devil was acting through witches to cause their physical afflictions. The “group think” among the highly religious and superstitious Puritans took over from there and the rash of executions of suspected witches began. Had the girls not had witches to use as a socially acceptable explanation at the time, those young girls could have easily been accused of being mentally disturbed and manifesting their own symptoms just as so many patients are still accused of doing today. Diagnosing someone with Psychosomatic Conversion Disorder is just as illogical as blaming witches, considering everything we now know about the intricate functions of the human body.

I have become personally aware of dozens upon dozens of people in recent years who were initially diagnosed with Psychosomatic Conversion Disorder, only to eventually be diagnosed with very real medical conditions years later. A number of them were even wrongly placed in mental institutions for a short time as a result. According to the Marshall Protocol Knowledge Base – Autoimmunity Research Foundation, examples of conditions that were previously diagnosed as Psychosomatic Conversion Disorder include Lupus, Multiple Sclerosis, Aids, and Lyme disease, just to name a few. In spite of this reality, the witch hunt continues to this day. Doctors still frequently render the baseless diagnosis of Psychosomatic Conversion Disorder, and disregard patients whose medical records include that as a previous diagnosis.

That was the diagnosis put in my daughter's medical records the first time she was hospitalized, while she lay in the hospital bed at 9 years old with paralysis from the waist down and suffering significant nerve pain. In reality, that initial attack was triggered by a reaction to an anti-inflammatory medication she had not had previously. That dismissive, unsubstantiated diagnoses became a potentially life threatening barrier to care for my daughter. It delayed both true diagnosis and subsequent treatment, prolonging her suffering for more than four needlessly terrifying, painfully debilitating, life altering, and significantly expensive years as her condition continued to worsen until finally being accurately diagnosed.

That initial dismissive diagnosis of Psychosomatic Conversion Disorder in my daughter’s medical record even resulted in her receiving no medical testing or monitoring four years later after being rushed to the children’s hospital ER due to a severe neuromuscular attack. She had required ER visits numerous times over the course of those four years, most frequently for attacks paralyzing her from the waist down. However, this particular attack was much worse, encompassing all of the muscles surrounding her spine and locking them in a very painful contraction that lasted for six hours.

Photo of my daughter taken at the onset of a neuromuscular attack surrounding spine. Photo taken October 13, 2015, age 12

The affected muscles spanned from the tip of her tailbone all the way up to the base of her skull, and caused her to experience difficulty breathing. It had been triggered by a seemingly harmless over the counter 4 hour decongestant, which I later learned is one of the many medications which can cause a shift in serum potassium. This is extremely dangerous for individuals with potassium related neuromuscular conditions like the one my daughter was later diagnosed with. The hospital notes entered by the ER doctor are simply a cut and paste of the initial incorrect diagnosis of Psychosomatic Conversion Disorder from four years earlier, noting it as “patient history”. She was simply given an anti-nausea medication and a Gatorade. And the medication the ER doctor recommended on the discharge note? It was that same medication that had landed my daughter in the ER in the first place that night. Fortunately, I disregarded his recommendation or she would have been immediately rushed back to the hospital, but this time by ambulance and quite potentially requiring life support.

Unfortunately, our experience is surprisingly common among those with rare neuromuscular disorders, especially teen girls. This is in spite of the well-known fact that many genetic conditions are triggered by hormone shifts which accompany the onset of puberty, and that neuromuscular disorders are in fact very real and often difficult to initially diagnose.

Diagnosis based on probability is still a primary tenet being taught in medical schools today. It continues to be the common approach throughout the medical community in spite of there being more than 7,000 known rare medical conditions impacting more than 30 million Americans. If you have the misfortune to present with one of the rare genetic neuromuscular disorders, odds are you will initially be disregarded as having Psychosomatic Conversion Disorder and referred to a Psychologist. This is great for Psychologists, but it does absolutely nothing to help the patient. In fact, it is a detriment to both the medical industry and health insurance industry as well.

© 2017