Periodic Paralysis and "Post Traumatic Medical Stress Disorder" (PTMSD)

Periodic Paralysis and "Post Traumatic Medical Stress Disorder"  (PTMSD)  Thank you Tanya!
 
A few weeks ago one of our members was venting, as we all do from time to time and have the right to do,  about being tired of being “sick” and experiencing a myriad of symptoms. Another member, wanting to be helpful, suggested that some of her symptoms sounded like another condition that may be coexisting with Periodic Paralysis and suggested seeing a specialist to seek another diagnosis.  The discussion turned to others saying they were not in the “mood” to be seeing more doctors and trying to get more diagnoses. To that, another member agreed that she too did not want to investigate any more medical issues. She said she had “ Post Traumatic Medical Stress Disorder” and wanted nothing to do with any more doctors.

To this comment I said, “Oh my gosh!  I love that term! I believe most of us with Periodic Paralysis suffer from it. Post Traumatic Medical Stress Disorder PTMSD! I am with you. I have so many medical issues, but I am not willing to follow through with any more doctors and any more testing for any more diagnosing, especially when I cannot take medications or drugs anyway!! It is too stressful and expensive. I follow the "Plan" and am doing as well as I can. I believe I may write a ‘blog' article about PTMSD. It will be our 100th blog article!!”

I finally have a free minute to put the article together. Instead of reinventing the wheel, however, I am going to gather or compile several articles in this blog  that have been written already about this subject. The horrible and despicable manner in which we are treated by doctors, thus creating Post Traumatic Medical Stress Disorder, is one of our main topics. Nearly every new member who joins us has the same story; years of testing and unforgivable treatment by the doctors and many still seeking a diagnosis; in a “Periodic Paralysis Limbo.”

Here are the facts:

Studies indicate that it takes an average of twenty years and is certainly very costly for someone with Periodic Paralysis to get a diagnosis. This is ludicrous and unconscionable. During those years an individual gets worse. They develop exercise intolerance, permanent muscle weakness, heart issues, breathing issues and are harmed from unnecessary medications. Some may even die.  Those twenty years or more consist of seeing doctor after doctor, specialist after specialist, taking test after test, because it is a condition in which a diagnosis is obtained by exclusion; it is diagnosed after everything else is ruled out.

Besides taking a long time it is very, very costly. I myself did not get a diagnosis until the age of 62. Some of our members in their eighth decade are still trying to get a diagnosis. Many die without one, some very early in life, while trying to get a diagnosis. My own great uncle died at the age of 41 during an episode.

Most have been given the diagnosis of “conversion disorder”, a mental condition. This is due to the doctors’ lack of understanding and using old and out-dated information about Periodic Paralysis and basically being too lazy to research any further to help their seriously ill patients.

It seems that doctors in general have learned little about Periodic Paralysis and even less about how to deal with chronically ill patients. They lack what is called "a good bedside manner."

I had recently considered writing another book, this time about the despicable treatment we have received and the horrible things that have been said to us and done to us while we were/are suffering and languishing in episodes of paralysis and weakness. Doing so would be cathartic and healing for us. We would be uncovering the truth of what happens when the examining room door closes or the ER curtain is drawn for privacy, when someone is extremely ill, in paralysis, afraid, vulnerable and unable to defend themselves. Instead I will address it here in another blog.

The arrogant, lazy, preoccupied and unprofessional doctor does not know what to do, so he/she begins to pinch the person, or stick them with a pin to get them to be honest, yells at them, calls them names, tells them to quit “faking”, lies in the hospital or office notes, for instance, “patient WILL NOT raise their leg” rather than “patient CANNOT lift their leg.” We have been ignored like naughty children in time-out, while left alone in paralysis until we stop misbehaving, when we may actually die if not treated for choking, breathing or heart stoppage and/or arrhythmia. They will tell us we are having ‘psuedo’ seizures and give us medications to make us worse or kill us after being told we cannot have drugs. They put us on IV's after telling them we cannot have them. They use lidocaine despite the information in our charts that it causes paralysis for us. They send us home despite still being in paralysis or they put us in the psyche ward of the hospital. They describe and force anti-psychotic drugs, which can kill us. They demand proof of the condition by genetic testing despite the fact that only about 50% of the forms of Periodic Paralysis have actually been discovered through DNA research. They force us into painful EMG muscle testing, over and over again despite the fact that it is not a conclusive diagnostic test. I could go on and on and have in both of our books and in many of our blog articles, which follow in this article.

We demand to be treated properly and with respect just like anyone else who has a devastating and disabling disease. Alas, I do not see that happening anytime soon, however, so most of us will continue to suffer from "Post Traumatic Medical Stress Disorder"  (PTMSD) and refuse to see any doctor despite what we may be suffering or experiencing.  We will refuse to call an ambulance, even though we should be in a hospital, we will suffer at home that, which no one should have to go through without medical assistance. Our family members, who care and believe us, must sit by and watch us knowing what will happen if we go to the hospital or call the doctor. They hope and pray they are caring for us correctly.

"Post Traumatic Medical Stress Disorder"  does exist for those of us with Periodic Paralysis, we experience it daily as we suffer through our episodes of paralysis and the myriad of other symptoms we experience while we attempt to treat ourselves. We know we have nowhere to go for proper treatment or care.

The following is one of the articles I wrote demonstrating the treatment received from a “specialist” by one of our members and my response to what he said. 

”Why Do You Need A Diagnosis?”

One of our members was at another frustrating appointment with a “specialist” attempting to get a diagnosis and proper treatment for her teenage daughter who has been suffering greatly during severe and painful episodes of paralysis several times a day and at night. The “specialist” in the process of being rude and arrogant, dared to ask the following question,  "Why do you need a diagnosis?” and then made the statement “There is no treatment," not really expecting an answer or reply.  Distressed and dismayed at yet another doctor’s demeaning, dismissive and egotistical attitude and no diagnosis for her ill and suffering daughter, our member related the story to us on our PPN Support and Education Group.

In answer to the doctor’s rhetorical question and ill-informed and unfortunate comment, Calvin responded with the following: "Why do you need a diagnosis?" Answer...”To stop the insanity and abuse they create by mistreating the condition. This phrase should be included as one of the triggers we use to find another doctor.”

He is absolutely correct. The problem is individuals with Periodic Paralysis need a diagnosis. We need it for safety reasons in the doctors’ office, the dentist office, an ambulance ride, the ER, the hospital, for surgeries and in any emergency. Most of us cannot take any drugs or medications due to idiosyncratic, paradoxical and iatrogenic effects nor can we have IV’s because sodium and glucose can shift our potassium even lower and causes other life-threatening symptoms nor can we tolerate anesthesia due to possible malignant hyperthermia and/or more life-threatening arrhythmia, paralysis, possible cessation of breathing and death. We need a diagnosis so we can be safe and free from harm in any and all situations.

The medical professionals in our lives need to know that we have Periodic Paralysis and how to treat us or not treat us, as the case may be. They need to know that when we are in paralysis and struggling with arrhythmia, fluctuating blood pressure and heart rate, chocking, breathing issues and pain, that although we cannot open our eyes or speak, we can hear them. They need to know that we are not faking. We are not making it up. Why would we??? Does anyone really think we want to be totally helpless and struggling for our life????

We also need a diagnosis to stop the constant, expensive and insane cycle of testing and retesting for every condition under the sun for an average of twenty years out of our life. (Some of our members did not get a diagnosis until they were in their eighth decade.) Because genetic testing is costly, narrow, biased and can only diagnose about half of all patients, diagnosing must be done clinically, based on symptoms, once “everything else is ruled out.” REALLY?? How many medical conditions exist in which an individual intermittently has episodes of paralysis??

During the cycle of insanity for a diagnosis, drugs of every type are prescribed which are unnecessary and harmful causing more damage and possible death. New symptoms may develop and then more testing is done and new drugs prescribed. The insanity continues. Then comes the diagnosis of “conversion disorder” or “somatic symptoms”.  Psychotropic drugs are prescribed at this point. More damage is done and possible death may occur.

Without a diagnosis and proper treatment, the individual naturally becomes more ill because organs in the body are being damaged from the potassium shifting, exercise intolerance and gradual permanent muscle weakness sets in, heart problems get more severe, breathing muscles become affected, osteoporosis, kidney stones develop. Metabolic acidosis can kill us. Adaptive equipment like power wheelchairs and oxygen may be necessary. Without a diagnosis the patients will be unable to receive these much needed aides. Without a diagnosis, disability or social security is impossible to receive.

The child, teenager and young adult with Periodic Paralysis will need a diagnosis for appropriate treatment. He or she will need accommodations in school. Teachers and school nurses need to know how to deal with the symptoms and paralysis and understand what is happening and why. There may be a great deal of school missed. Sports and other activities need to be avoided. A special diet must be followed. Wheelchairs or other adaptive equipment may be needed. Without a diagnosis none of this will happen.

For the adult trying to support a family by holding down a job or a career and living with Periodic Paralysis without a diagnosis and proper treatment may lose their job. The years and years of medical testing, misdiagnosis, wrong medications, inappropriate treatment and more can result in financial ruin. This can lead to homes being lost, divorce may ensue, families will fall apart, friends back away, depression sets in and possible suicide may occur. A clear diagnosis and treatment may help others like employers, family members and friends to understand and be willing to help. Disability may be possible.

One of the most important results of a diagnosis for the individual with Periodic Paralysis and his or her family is validation. Validation that the illness does truly exist and that he or she is finally believed. They are vindicated. Vindicated of making it up, faking it or being a hypochondriac. They do not have “conversion disorder.” They have been telling the truth.

And so doctor, “Why do we need a diagnosis?” We need a diagnosis because we want a chance at the quality of life you are experiencing. We need a diagnosis because we want to be treated with dignity and respect. We need a diagnosis because we want to be free of or ease our paralysis, arrhythmia, heart issues, breathing issues and more with the possibility of proper treatment or medication. We need a diagnosis because we would like to use our family's hard earned money to take care of our needs rather than paying for unnecessary testing and harmful drugs. We need a diagnosis so we can obtain adaptive equipment to make our lives and that of or loved ones easier.  We need a diagnosis so we can be safe in emergency situations. We need a diagnosis because we want to live!!!

In conclusion, your rhetorical question and following comment indicate you lack any understanding of the ill patients who come to you for help. You obviously lack understanding, caring, compassion, empathy and sympathy. Your knowledge of Periodic Paralysis is obviously limited and based on archaic information because there is a great deal that can be done to treat our symptoms, once we have a diagnosis. You are obviously not living up to the Hippocratic Oath that I assume you pledged early in your career. You are not doing the job for which you we hired. And you sir are now fired!!!

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The following are articles written by me and members of our PPN Support Group in the order that they were written, related to the problems with gaining a diagnosis and the mistreatment by medical professions, thus leading to "Post Traumatic Medical Stress Disorder"  (PTMSD)

These do not inlude the daily discussions of our members about this issue….

”Periodic Paralysis And Iatrogenic Illness”
http://livingwithperiodicparalysis.blogspot.com/2013/11/periodic-paralysis-and-iatrogenic.html


”Periodic Paralysis And The ER…The Narrative”
http://livingwithperiodicparalysis.blogspot.com/2013/12/periodic-paralysis-and-erthe-narrative.html


”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

“My Story: How I Got My Diagnosis Of Periodic Paralysis”

http://livingwithperiodicparalysis.blogspot.com/2014/02/my-story-how-i-got-my-diagnosis-of.html

”The Truth About Diagnosing And Treating Periodic Paralysis”
http://livingwithperiodicparalysis.blogspot.com/2014/02/the-truth-about-diagnosing-and-treating.html

”Clinical Diagnosis vs Genetic Diagnosis”
http://livingwithperiodicparalysis.blogspot.com/2014/03/clinical-diagnosis-vs-genetic-diagnosis.html

”Our Diagnostic Rights”
http://livingwithperiodicparalysis.blogspot.com/2014/03/our-diagnostic-rights.html

”A Reply To ’Conversion Disorder’ Diagnosis By Guest Blogger Maureen”
http://livingwithperiodicparalysis.blogspot.com/2014/05/a-reply-to-conversion-disorder.html

”Open Letter To Doctors By Guest Writer Carolanne”
http://livingwithperiodicparalysis.blogspot.com/2014/07/open-letter-to-doctors-by-guest-writer.html

”All Patients Should Be Treated With Dignity! Guest Blogger: Maria Pinzon”
http://livingwithperiodicparalysis.blogspot.com/2014/07/all-patients-should-be-treated-with.html

”Why Do You Need A Diagnosis?”

http://livingwithperiodicparalysis.blogspot.com/2014/09/why-do-you-need-diagnosis.html

”Genetic Testing Should Be For Any Mutation Close To The Relevant Gene”
http://livingwithperiodicparalysis.blogspot.com/2014/09/genetictesting-should-be-for-any.html

”Why Haven’t They Done Genetic Testing”
http://livingwithperiodicparalysis.blogspot.com/2014/10/why-havent-they-done-genetic-testing.html

”Conversion Disorder Again??  Really?”
http://livingwithperiodicparalysis.blogspot.com/2014/10/conversion-disorder-again-really.html

”This is Not an Acceptable Way To Make  Diagnosis”
http://livingwithperiodicparalysis.blogspot.com/2014/10/this-is-not-acceptable-way-to-make.html


Until later...