Hello All,
(There are many names for it....conversion disorder, somatization, functional disorder (FND), lying, faking it, and much more...but nearly everyone of us has been treated as if we were faking our symptoms and some of us have been diagnosed with 'conversion disorder'...it is so wrong and we continue to hear the horror stories as our new members join us.....)
The term "conversion disorder" comes up often in our support group. We have all been victims of this mislabel much to our detriment. With each wrong diagnosis and wrong medication we get sicker, more damage is done to our organs and permanent muscle weakness sets in. We risk death each time we go into paralysis. My blog today is about conversion disorder.
Although
it took me 62 years to get a diagnosis, statistics indicate it takes
approximately 20 years for someone to get a diagnosis for Periodic Paralysis.
This is inexcusable and is due to several factors. First, everything else must
be ruled out and secondly, because it looks “fake” to doctors. One of the
physicians, who originally diagnosed me, told me that of
the few patients he has had with Periodic Paralysis, they were all diagnosed
with “conversion disorder” before they got their diagnosis. I myself received
this diagnosis, as did most of the more than 1,000 members of my Periodic Paralysis Network
Support and Education Group.
This did not happen 100 or 50 years ago, but in the
past few months. One young woman went into full-body paralysis lasting many
frightening hours. She came out of it to discover she was in such a weakened
state that she could not walk or even do something as simple as getting dressed
without becoming totally fatigued and she was in total body pain. Doctors
evaluated her and sent her to a psychiatrist. She was diagnosed with conversion
disorder and prescribed a well-known drug used to treat depressive disorders
and a well-known pain reliever. She spent the next few months unable to walk
and in excruciating pain and in and out of paralytic attacks each lasting many
hours. She was unable to work or take care of her young children.
Upon learning of Periodic Paralysis (PP), after much
research, her husband discovered the effects of the drugs on someone with PP.
He found out that both medications had elements that can actually trigger the
paralytic episodes. Immediately she began to taper off of them. Within weeks, the pain began to ease; she was able to stand and walk a few steps with help and
became somewhat functional again. After a few more weeks she was walking with
the aid of two canes and able to do simple tasks. She did not have any episodes
of paralysis for two months. Though she does not have a diagnosis and probably
will not get one for some time to come, her psychiatrist now regrets his
diagnosis and prescribing the drugs. He has been referred for more tests to
possibly diagnose Periodic Paralysis.
Another patient, an older man, has suffered with
paralytic episodes for years. Gradual muscle weakness ensued until this person
had to give up a teaching career. Testing ruled everything else out and a
muscle biopsy revealed damage to muscle fibers consistent with PP. Despite
these findings, after being forced to see a psychiatrist, the man was diagnosed
with conversion disorder while in the hospital because of almost constant
paralytic episodes.
This is just the tip of the iceberg for individuals
with Periodic Paralysis. They have unexplained bouts with partial to total body
paralysis, which include frightening heart arrhythmia; choking; fluctuating
blood pressure and heart rate. While in this state they are unable to
communicate, they are given IVs with medications/drugs/compounds, which make it
worse. They are able to hear everything going on as the doctors insist they are
faking it, insisting they are having pseudoseizures, pinching them or sticking
them with needles to make them respond, demeaning and insulting them and their
family members. Conversion disorder is written in the charts and comments like,
“refused to lift leg when asked” was written rather than the truth, which was
“cannot lift his leg when asked.” Some people actually die during these
horrific ER or hospital stays and the death certificate may contain any number
of false causes.
What is a conversion disorder? According to R.J. Brown, "Conversion disorder presents with symptoms that typically resemble
a neurological disorder such as stroke, multiple sclerosis, epilepsy or hypokalemic
periodic paralysis. The neurologist must carefully exclude neurological
disease, through examination and appropriate investigations. 1
According
to the DSM-IV-TR
(2000) six criteria exist for diagnosing conversion disorder:
- The patient has one or more symptoms or deficits
affecting the senses or voluntary movement that suggest a neurological or
general medical disorder.
- The onset or worsening of the symptoms was preceded by conflicts or stressors in the patient's life.
- The symptom is not faked or produced intentionally.
- The symptom cannot be fully explained as the
result of a general medical disorder, substance intake, or a behavior
related to the patient's culture.
- The symptom is severe enough to interfere with
the patient's schooling, employment, or social relationships, or is
serious enough to require a medical evaluation.
- The symptom is not limited to pain or sexual dysfunction, does not occur only in the context of somatization disorder, and is not better accounted for by another mental disorder.
Brown also suggests, "Another feature thought to be
important was that symptoms would tend to be more severe on the non-dominant
(usually left) side; there were a variety of theories such as the relative
involvement of cerebral hemispheres in emotional processing, or more simply
just that it was "easier" to live with a functional deficit on the
non-dominant side. However, a literature review of 121 studies established that
this was not true, with publication bias the most likely explanation for this
commonly held view.[15] Although agitation is often assumed to be a positive
sign of conversion disorder, release of epinephrine is a well-demonstrated
cause of paralysis from hypokalemic periodic paralysis.[16]" 2, 3
In conversion disorder, it is believed that the patient is
unaware that he or she is causing the symptoms and he or she is very
frightened. The symptoms come on suddenly and usually get worse. The main
symptom is called pseudoparalysis.
“In pseudoparalysis, the
patient loses the use of half of his/her body or of a single limb. The weakness
does not follow anatomical patterns and is often inconsistent upon repeat
examination”.
These differences are key but
problematic. Stress, good or bad, can be a trigger for an episode of paralysis,
so an examining doctor may ask and discover there has been some stress in the
recent past of the individual. The second issue is that most episodes of
paralysis are full-body, but some may only have partial paralysis and only half of the body or only one limb is affected. There is not a person alive who would
not be very frightened to become suddenly paralyzed and end up in the ER in
need of medical attention. The episode may be inconsistent if the patient is
given an IV or medication. This may cause new symptoms. Upon examination in an hour
or two, either they are coming out of it or worse with different symptoms. This
may all happen if someone has Periodic Paralysis.
One further thing that needs to be noted; the statement about epinephrine is
very concerning. If a medical professional knows that epinephrine can cause a
paralytic episode in someone with Hypokalemic Periodic Paralysis or
Andersen-Tawil Syndrome, he or she may take it upon themself to use it on the
patient to trigger an episode. This can kill someone with PP so should never be
done. Seeing it in writing in a study can lead an inexperienced doctor without
all of the facts to try it. Provoking an episode to prove or disprove someone
has a conversion disorder is absolutely not to be done. One of our young members
died last year in this exact manner.
In all of my research, each
article I found on the subject of conversion disorder listed Periodic Paralysis
or one of its forms as a differential diagnosis; a condition that looks like or
mimics it.
It makes me wonder if, in fact, individuals who actually had some form of
Periodic Paralysis have been mistaken for conversion disorder and were the
actual models for it. By that I mean, did people who were in actual full body
paralysis due to PP or those who were in partial paralysis become the first
individuals seen as having pseudoparalysis and that pseudoparalysis really does
not exist?
So, as far as I am concerned,
when an individual arrives in the emergency room in paralysis with no known
cause, it should first be assumed that he or she has a form of Periodic Paralysis
and he or she should be treated as such. Never should he or she be considered
faking, adding more stress which, then leads to more paralysis. A protocol for
treating Periodic Paralysis should then be followed.
1. Brown, RJ. "Psychological mechanisms of medically
unexplained symptoms: an integrative conceptual model." Psychol Bull. 2004
Sep;130(5):793–812.
2.
Roelofs K, van Galen GP,
Keijsers GP, Hoogduin CA. "Motor initiation and execution in patients with
conversion paralysis." Acta Psychol (Amst). 2002 May;110(1):21–34.
3.
16. Brown, R. J.; Cardena,
E.; Nijenhuis, E.; Sar, V.; Van Der Hart, O. (2007). "Should Conversion
Disorder Be Reclassified as a Dissociative Disorder in DSM V?". Psychosomatics
48 (5): 369–378. doi:10.1176/appi.psy.48.5.369.
PMID 1787849
Until later...
