I apologize for not posting the past two days. I was very busy with the launch of my second book, Sotos Syndrome: A Tribute To Sandy. It is now on Amazon.
I had a setback last week with another apparent TIA, but am getting a little better each day. I keep at my work and writing and hope that you are all continuing to learn about and understand Periodic Paralysis for yourself and/or your loved ones. If you have any questions or would like to suggest a topic, please feel free to ask in the comments.
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 125 members of my Periodic Paralysis Network Support and Education Group.
- 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.
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 them self 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 if the facts to try it. Provoking an episode to prove or disprove someone has conversion order is absolutely not to be done. One of our young members died last year in this exact manner.
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?