Periodic Paralysis and Iatrogenic Illness? November 23, 2013
Hello All,
The word “iatrogenic” refers to any type
of inadvertent, adverse condition or illness, which is the result of a medical
professional’s activity, therapy or manner. In my opinion this also refers to
the inaction of a medical professional, which results in an adverse condition.
I am the co-founder and co-manager of an independent, advocate, health organization, the Periodic Paralysis
Network. We work towards the improvement of the quality and safety of patients
from all over the world with the various forms of Periodic Paralysis (PP) a
very rare, inherited, disabling mineral metabolic disorder. Our focus is on
educational resources to build self-reliance and self-empowerment and to
prevent possible harm from improper treatment. Our approach to treatment
focuses on the self-monitoring of vitals and the management of symptoms through
natural methods. We also offer strategies to understanding the disease, getting
a proper diagnosis, managing the symptoms, and assisting caregivers and family
members. We are patient-safety-related due to the serious nature and potential
life-threatening symptoms and side effects of this condition if it is not
treated correctly.
The Periodic Paralysis Network has a forum containing three distinct discussion
groups. I moderate these forums and in that capacity I am continually
researching all of the aspects of the various forms of Periodic Paralysis. I
attempt to locate the latest studies and any other information, which may help
our members in dealing with their symptoms and understanding this condition.
This morning, as I was doing my normal research, I was introduced to
the word “iatrogenic”. A support and
education organization exists for individuals who have been the victims of
“iatrogenic” medical treatment resulting in adverse
conditions or illnesses. They use this term in their title. I was researching groups for victims of malpractice, because
many of our members, myself included, are survivors of malpractice and
negligence at the hands of medical professionals due to the nature of our
disease.
The
following is in part, what I wrote to our members after my research:
“In my
research today I learned a new word which can apply to those of us with PP in
several ways:
IATROGENIC:
iatrogenic /iat·ro·gen·ic/ (i-ă´tro-jen´ik) resulting from the activity of
physicians; said of any adverse condition in a patient resulting from treatment
by a physician or surgeon.
i·at·ro·gen·ic (-tr-jnk)
adj.
Induced
in a patient by a physician's activity, manner, or therapy.
http://medical-dictionary.thefreedictionary.com/iatrogenic
After researching the word, “iatrogenic”, I believe that most of those individuals with Periodic
Paralysis have been on the receiving end of this, especially the wrong
diagnoses we have received and the wrong administration of drugs for wrongly
diagnosed conditions. Also, by the administration of certain drugs for our
condition that are harming us by causing kidney stones and metabolic acidosis
and even death in a few cases. This is usually inadvertent (not on purpose, of
course, in most cases).
Here is a study for instance, that makes me wonder
about my own situation. I definitely had symptoms and signs of PP since I was a
young child. All of my life was a gradual, chronic progression towards being
deemed disabled at 50. However, something happened afterward that suddenly
thrust me to where I am today, totally disabled and unable to do much of
anything without causing paralytic episodes and risking death each time due to
the life-threatening arrhythmia which accompanies them.
Just before the "big seizure" I had 3 years
ago, I was on 15 medications including an experimental drug for severe
osteoporosis. I had to inject myself every night with a syringe filled with the
drug into my thigh. I suddenly had a seizure-like, stroke-like event, which
left me totally unable to care for myself. I had to be bathed, dressed, fed
etc. I had to learn to walk again. I never recovered to the condition I was
before the seizure, which was not good to begin with due to my wrongly
diagnosed condition. Was one or all of these medications the cause for this
event and permanent damage? There is no doubt that I am in my present physical
condition due to “iatrogenic” treatment.
As I continued to research “iatrogenic”, I discovered
an article/study, which discusses the iatrogenic effects of statins, the drugs
used to reduce cholesterol. I personally, was put on every type there was over
a period of several years. Each time it created a condition called
rhabdomyolysis, serious painful muscle wasting. The pain was excruciating in my
calves and now never goes away, a definite “iatrogenic” effect. Every time I
went to my doctor and told him I had to stop the new one he gave me, he got
angry and on one occasion he threw something across the room!! (Needless to
say...I found a new doctor.)
The following is what this study indicates:
"…statins may also initiate immune-mediated forms
of necrotizing and inflammatory myopathy and unmask or aggravate various
metabolic myopathies and other neuromuscular disorders."
http://www.ncbi.nlm.nih.gov/pubmed/20581681
Periodic Paralysis is a mineral metabolic disorder affecting the muscles in our
body. How many of you have been on statins or are now
on statins?? How many of you have had your paralytic or weak muscle symptoms
worsen since using the statin?? Could statins have been a trigger for some of
us? Did the use of a statin result in “iatrogenic” illness.
Since so little is known about Periodic Paralysis, we
need to be our own experts about our own bodies and our own disease!!!!! If you
are on any medications, regardless of the fact they may be for your particular
form of PP, please study it thoroughly. That includes the use of anesthesia. If
you do not study it by really digging and searching for "RARE" side
effects or go to a website where people are suing over the use of a drug to
discover these things, they can be overlooked by the doctors or yourself.
I know of a few cases recently among members of our
boards in which, certain anesthesia thought to be permissible for someone with
ATS, a form of PP, turned out to possibly cause long QT heartbeats and other
cardiac issues, muscle weakness and respiratory issues. One member was in the
hospital for almost a month, after a procedure, due to those side effects and
issues. This was a definite
“iatrogenic” result. After researching it as described above, I found
the hidden information.
I believe that this new word,
“iatrogenic”, also can apply to those individuals with Periodic Paralysis who
become more ill due to the lack of a diagnosis. Many of our members have been
waiting years for a diagnosis. (I was not diagnosed until the age of 62.) Most
doctors are reluctant to diagnose the various forms of PP although everything
else has been ruled out. They insist that a patient must have a genetic code
found during DNA testing. The problem with this ideation is that nearly half of
all individuals with PP have no known genetic code discovered yet and may never
have in their lifetime. So it must be diagnosed based on symptoms and
characteristics. This is called a clinical diagnosis, the manner in which most
diseases are diagnosed.
So if doctors are withholding a diagnosis or failing to diagnose due to out of
date information or a lack of proper understanding and knowledge of the disease
and thus patients are not getting proper treatment, these individuals are
becoming more ill and or dying due to "iatrogenic" medical treatment.
Our boards are here to help educate everyone on how to
better understand Periodic Paralysis. We are searching everyday for better
answers to our questions and our needs. We place the information we discover on
the boards everyday. It is up to you how to use it. We must all make decisions
about how to deal with our symptoms and conditions, but we must make
"educated" decisions. It seems we cannot simply follow the lead of
our doctors. In most cases we know more than they do about Periodic Paralysis
and how it affects us. So those of us with PP
must be our own best experts with our disease, because no one else is watching
out for us.”
Until Later...
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