Conversion Disorder Again?? Really??

Hello All,

It appears I need to write one more blog about diagnosing Periodic Paralysis. There are so many aspects to it, that I find I need to write about it often.

One of our members who recently had genetic testing wrote this morning to let us know that the testing had come back negative for Periodic Paralysis and her doctor is now ready to diagnosis her with ‘conversion disorder.’ She also mentioned that the testing was for only two genetic mutations of Periodic Paralysis! This is unbelievable and unconscionable. She has intermittent episodes of muscle weakness associated with documented low potassium levels. It could not be more clear that she has a form of Periodic Paralysis. The following is my response to her post.

Dear Friend, 

I am so sorry that you are now caught in the 'Periodic Paralysis vs Conversion Disorder Dilemma' based on archaic information and inept and arrogant medical professionals.  You are the prime example of what I am continually writing about. The genetic testing done on you was biased and narrow. They only tested for two mutations!!!!!!! The professionals say only about 50% of those tested will have a positive finding because only about 50% of the known genetic mutations have been found. Right now that covers at least five known different mutations, SCN4A, KCNJ18, CACNA1S, KCNJ2, KCNJ5 under which scores of alleles (SNPs) exist and some combinations and interplay of those alleles and mutations on many exons cause Periodic Paralysis. How do they know only 50% or 60% have been found? So many people are told that they do not have PP after such useless testing and are then considered to have 'conversion disorder' that they are not even figured in to the numbers of those who possibly have PP! 

What I believe is, the number of those who are actually diagnosed genetically is much smaller than the overall number of those who actually have a genetic mutation. If you factor in the fact that we do not know how many varying mutations there may be in all of us and those that change with each generation, there is no way to know how many genetic mutations actually exist for Periodic Paralysis. Whole genome testing may be the only way to know or secure a genetic diagnosis if the research is done by someone who willing to look for such rare and unknown mutations.

That being said, I will say it again...."How many diseases or conditions actually exist that can cause intermittent paralysis or muscle weakness based on potassium shifting (even if it is within normal levels)???" Once the tests for those conditions have been completed and those conditions ruled out, then a form of PERIODIC PARALYSIS IS THE MOST LIKELY DIAGNOSIS...NOT MENTAL ILLNESS!!!!! Why does the diagnosis automatically become 'conversion disorder?' Conversion disorder is diagnosed in 1 to 3 in 10,000 and Periodic Paralysis is diagnosed in 1 in 100,000. I cannot help but wonder how many people diagnosed with 'conversion disorder' actually have a form of Periodic Paralysis or anyone of the between 5,000 to 7,000 known rare diseases, also called 'orphan diseases??

I wish I had some way to change the thinking of these doctors, but it seems to be, “I do not know what is wrong and I do not know what to do, so I will call it a mental disorder so I can refer you on to someone else. I do not want to deal with you any longer.”  Instead they should be diagnosing us with Periodic Paralysis based on our symptoms.

Perhaps the following blogs may help you to feel better about yourself and give you some clues on how to find a doctor who does care and wants to help.

Conversion Disorder vs Periodic Paralysis

http://livingwithperiodicparalysis.blogspot.com/2013/12/conversion-disorder-vs-periodic.html

Finding a Doctor Who Cares

http://livingwithperiodicparalysis.blogspot.com/2013/12/finding-doctor-who-cares-december-19.html

http://www.humanillnesses.com/Behavioral-Health-Br-Fe/Conversion-Disorder.html

http://ghr.nlm.nih.gov/condition/hypokalemic-periodic-paralysis

http://en.wikipedia.org/wiki/Rare_disease