Serene Forest

Saturday, November 23, 2013

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 /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)
Induced in a patient by a physician's activity, manner, or therapy.

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."

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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