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!!!
~~~~~~~~~~~~~~~
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”
“Finding a Doctor Who Cares”
“My Story: How I Got My Diagnosis Of Periodic Paralysis”
”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...
