Serene Forest

Thursday, September 19, 2019

'A Bill Of Rights For Periodic Paralysis Patients' 4th Anniversary!

Hello All,
This week is the 4th anniversary of the release of our book "A Bill Of Rights For Periodic Paralysis Patients." This is an important book to add to your collection if you do not already have it. Most of us are under recognized, under diagnosed, misdiagnosed, misunderstood and mistreated by the medical professionals with whom we must deal and depend upon for our care. This book helps to empower you in these dealings by allowing you to know your rights in order to get correctly diagnosed and to stay safe in receiving the appropriate care. These rights include general rights; diagnostic rights; the right to proper treatment in the laboratory, by doctors and in the ER; the right to research and awareness and issues related to insurance rights. These have been and are being violated in many cases.

Many of our members carry this book with them to all of their medical appointments!!

Link to purchase book:
https://www.amazon.com/Susan-Q-Knittle-Hunter/e/B00HVEBSSQ/ref=dp_byline_cont_pop_book_1

Below is more information about the book including the Contents, Preface and Introduction.

"A Bill Of Rights For Periodic Paralysis Patients"
From
The Periodic Paralysis Network A.S.E.A. Series
Awareness ~ Support ~ Education ~ Advocacy
Volume One

Susan Q. Knittle-Hunter
&
Calvin Hunter

Table of Contents

About A.S.E.A. vi
Preface viii
Acknowledgements ix
Introduction x
What is a Bill of Rights? 13
The General Rights 29
The Diagnosis of Periodic Paralysis 41
Treatment in the Laboratory 55
Treatment by Doctors 63
Treatment in the ER and Hospital 75
Research and Awareness 99
Insurance 105
Conclusion 109
Periodic Paralysis Forum 110
About the Authors 111

Preface
The Preface of a book gives the reader information about how the book came to be, where to idea originated. In the case of this booklet, the members of the ‘Periodic Paralysis Network Support, Education and Advocacy Group’ inspired A Bill of Rights For Periodic Paralysis Patients. The members, now over 425 (over 900 now) worldwide, share daily their heart-breaking and frustrating experiences. They relate frightening symptoms, years of painful and costly testing, a lack of being believed, abuse by doctors, denial of diagnoses and denial of proper treatment. These courageous and very ill people are under recognized, under diagnosed, misdiagnosed, misunderstood and mistreated by the medical professionals with whom they must deal and depend upon for their care. Their general rights; diagnostic rights; the right to proper treatment in the laboratory, by doctors and in the ER; the right to research and awareness and issues related to insurance rights have been and are being violated in many cases. This needs to stop.
For these reasons a bill of rights for individuals with Periodic Paralysis has been created, by the PPN. The information used to outline, describe and explain these concepts and rights are referenced and can be found at the Periodic Paralysis Network, Inc. Website, Blog Articles, Discussion Groups and Books.

Introduction
As discussed in the Preface and for the reasons listed, there was and is a great need for a bill of rights for all individuals who have a form of the metabolic disorder known as Periodic Paralysis. The Periodic Paralysis Network, inspired by the members of the ‘Periodic Paralysis Network Support, Education and Advocacy Group’ has now created A Bill of Rights For Periodic Paralysis Patients. This booklet, the first in the PPN A.S.E.A. Series, begins with an explanation of what a ‘bill of rights’ is and why they are written or created.
Next, ‘A Bill of Rights For Periodic Paralysis Patients’ is outlined in seven sections, covering general rights, diagnosis, treatment in labs, treatment by doctors and treatment in the emergency room and the areas of research, awareness and insurance. In those, each concept is described and explained based on the true and actual history, experiences and needs of individuals with Periodic Paralysis.
Hopefully, this information will bring about awareness of these issues and educate everyone who has the occasion to read this booklet as well as the medical professionals with whom individuals with Periodic Paralysis must depend upon to insure correct and proper care. By pointing out the wrongs, it is greatly desired that these wrongs can be made right and corrected.
More information and referencing can be found at the Periodic Paralysis Network Inc Website, Blog Articles, discussion groups and books; Living With Periodic Paralysis: The Mystery Unraveled, The Periodic Paralysis Guide And Workbook: Be The Best You Can Be Naturally and What is Periodic Paralysis?: A Disease Like No Other.

Saturday, September 7, 2019

Now Providing HOPE to Over 900 Members!!


If you have Periodic Paralysis or believe you may have it, please join us on our  Periodic Paralysis Network Support Group. Family members and caregivers are also welcome!!

(Please answer all of the questions on the request or you may not be added to the group.)

https://www.facebook.com/groups/periodicparalysisnetworksupportgroup/


Wednesday, June 26, 2019

An Overview Of Fighting For And Receiving A Diagnosis For Periodic Paralysis




An Overview Of Fighting For And Receiving A Diagnosis
For
Periodic Paralysis


Although I have written more blog articles about ‘diagnosing’ Periodic Paralysis (PP) than any other subject related to this medical condition, I have decided to write one more blog article about it. I want to tie together information from several of my other articles and add some newer information, especially for new members who are attempting to get a diagnosis. I will start with why we need a diagnosis.

Why Do We Need a Diagnosis?

 “To stop the insanity and abuse the doctors create by mistreating the condition.”

People with Periodic Paralysis need a diagnosis. We need it for safety reasons in the doctor’s office, the dentist’s 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 (I have written more blogs written about this) nor can we have IV’s because sodium and glucose can shift our potassium even lower or higher 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. I myself was diagnosed at the age of 62.) Because genetic testing is costly, narrow, biased and can only diagnose about half or less 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. Receiving 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, “Why do we need a diagnosis?” We need a diagnosis because we want a chance at the quality of life everyone else is 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!!!

However, there are many issues regarding how to obtain a diagnosis!


Understanding the Problems With Diagnosing Periodic Paralysis

The question of how to get a diagnosis comes up nearly everyday in our PPN Support Group, especially as each new member joins us. In order to answer this question, much must be explained about the condition in order to understand how one can get diagnosed.

PP is a very rare, little understood, under diagnosed, often misdiagnosed, inherited medical condition that is diagnosed using the process of elimination or exclusion; once all else is ruled out, unless there is very clear indication of high or low potassium shifts associated with periods of weakness or paralysis and/or if a genetic mutation is discovered. (This is not usually the case.)

If anyone's symptoms are atypical, different or not ‘textbook’ which is a great majority of us, (including issues with no potassium shifting when tested, experiencing pain or other odd symptoms or other conditions co-existing with our episodes of muscle weakness and/or paralysis) then the ‘specialists’ or ill-informed doctors using old, archaic information existing on-line do not recognize it or understand that it can be atypical (different) or exist with other conditions. They may believe that potassium must shift out of ‘normal’ ranges in order to be PP. They do not understand that some of us with PP have a different ‘normal’ level for our potassium than other patients or about other forms of PP such as Normokalemic Periodic Paralysis or Andersen-Tawil Syndrome (ATS). When in medical school, doctors are given one paragraph in their medical training about PP. They are taught that PP is too rare to ever be seen in a patient during their lifetime as a doctor.

One must find a doctor (any type, but best to stay away from neurologists except for the testing to rule everything else out) who is willing to work with them and study it and understand it and be willing to diagnose it, clinically, based on symptoms and characteristics. Otherwise, a diagnosis is almost unobtainable.

PP is a mineral metabolic disorder, also known as an ion channelopathy related to potassium. On a cellular level, if the potassium is triggered to shift in and out of the cells (by many things...drugs the worst offender), it does so in error. This causes many symptoms and the possibility of total paralysis.

Before a diagnosis can be received, all other medical conditions must be ruled out. The myriad of symptoms looks neurological, so we are sent to neurologists for diagnosing. They begin to test for all of the neurological conditions possible and they also begin to prescribe drugs for neurological conditions. These drugs make us worse and we develop more symptoms and worse symptoms all the while damage is being done creating new symptoms. It is a horrible vicious cycle and due to all of this it takes an average of 20 years to get a diagnosis, if ever.

So testing by a neurologist and other specialists is necessary, but not the drugs they ultimately prescribe. At the point everything else is ruled out, Periodic Paralysis should be diagnosed, but instead the neurologists will diagnose with mental disorders known as conversion disorder or a somatic condition or a functional disorder of some form. Then they refer patients to psychiatrists where different forms of drugs like anti-psychotics or antidepressants and more are prescribed.

Thus. Like me...50 years later...after much damage from many misdiagnoses and many drugs I did not need...I finally received a diagnosis!

This cycle has to stop. In the twenty-first century it should not take 20 to 50 years to fight for a diagnosis, all the while living in “diagnosis limbo” as symptoms get worse and irreversible.


Types of Diagnosing

Clinical Diagnosis

As I said previously, Periodic Paralysis is a mineral metabolic disorder. It is typically diagnosed ‘clinically’ (based on symptoms and characteristics) after all else is ruled out by testing. Each form of PP has specific symptoms that can help to distinguish it from other types and other medical conditions. These can include low potassium levels, high potassium levels, normal potassium levels, certain heart issues, episodes of muscle weakness or paralysis and much more. There are also certain characteristics that can accompany Andersen-Tawil Syndrome (ATS), which can make it easier to be diagnosed such as fused/webbed and/or curved fingers and toes, small jaw, low set ears, dental anomalies, long QT heart beats and more.

A 'clinical' diagnosis for PP is a perfectly acceptable diagnosis!


Problems Involving in Getting a Clinical Diagnosis: Provoking Symptoms

Warning!

Under no circumstances should an individual provoke his or her symptoms or allow a doctor to provoke his or her symptoms or an episode of paralysis by causing an insulin/glucose overload, omitting medication, ingesting foods or performing activities which are known triggers. This is a very serious thing to do and can lead to death.

Some uninformed doctors using very old, archaic information about diagnosing PP may attempt to ‘provoke’ a patient’s symptoms in order to see them and to ‘prove’ that they have PP.  This should not be done. I would like to address this serious issue. At this point it is well known that it is a dangerous thing to do and can have serious implications, namely death for some people.

For those who may need to tell their doctor's "no" on this issue I will provide some links with information about this.

"Diagnosis
This disease is unusually difficult to diagnose. Patients often report years of wrong diagnosis and treatments that made them worse instead of better. Part of this may be that migraines are present in up to 50% of patients and can cause a confusing array of symptoms including headaches, speech difficulties and visual, auditory or sensory auras. DNA testing is available for only a half dozen common gene mutations, while dozens of known mutations are possible but are not routinely tested. Electromyography (EMG) findings are not specific. The old glucose/insulin provocative testing can cause life-threatening symptoms and should not be used.

Also of note is that potassium levels do not have to range outside of normal limits to cause serious, even life-threatening paralysis. These diseases are not the same as having a very low level of potassium (hypokalemia) or high potassium (hyperkalemia) and must not be treated as such. The total body store of potassium is usually normal; it is just in the wrong place."
https://en.wikipedia.org/wiki/Periodic_paralysis

“Provoking an attack with exercise and diet then trying oral potassium can be diagnostic, but also dangerous as this form of PP has an alternate form known as hyperkalemic periodic paralysis.”

"Provocation testing
Provocative testing, eg exercise test, or insulin or glucose infusion, can be employed but, for safety, is best within secondary care:[6]

A doctor should be present during testing.

It should be performed in a setting where intensive care, such as ventilation, may be provided if required, with facilities for rapid electrolyte and glucose testing and correction.

Do not test patients with serum potassium disturbances, diabetes mellitus, or renal or cardiac dysfunction. There must be close monitoring of the ECG."
https://patient.info/doctor/hypokalaemic-periodic-paralysis

"The best diagnostic indicator is a history of typical episodes. If measured during an episode, serum K may be abnormal. Episodes can sometimes be provoked by giving dextrose and insulin (to cause the hypokalemic form) or KCl (to cause the hyperkalemic form), but only experienced physicians should attempt provocative testing, because respiratory paralysis or cardiac conduction abnormalities may occur with provoked episodes."

How To Get A Clinical Diagnosis


As stated previously, getting a diagnosis is very difficult unless you have symptoms that are very typical and as described and limited in the archaic textbooks and information on line. We know it takes an average of 20 years to get diagnosed with PP (remember, mine took over 50 years). That is because it is diagnosed after all else is ruled out. Once all else is ruled out, we have discovered the doctors (usually the neurologists) prefer to diagnose with a mental disorder rather than doing more research or saying they do not know what it is because they can then pass you on to someone else...a psychiatrists!

It is usually neurologists who do all of the testing because the symptoms look neurological, however, Periodic Paralysis is an ion channelopathy, which is a mineral metabolic disorder, which they do not understand. They will also start giving out drugs for neurological symptoms. These will make the symptom worse and change the symptoms or cause new symptoms for which they will then prescribe new drugs, not realizing that drugs to us are our worst triggers and can even harm and kill us.

As far as all of the testing goes, an EMG will not diagnose PP (though some of our members have had doctors diagnose after an EMG) and will not rule it out either and it can rule out other conditions. MRI's will not diagnose PP, but will rule out other things as well. Muscle biopsies are invasive and cannot diagnose PP. The only way blood work will be helpful is if you have low or high potassium during an episode, which is caught at the moment you are having it.  Many, of us have episodes within normal potassium levels. Potassium shifts very quickly usually and by the time our blood is tested has returned to normal levels.

The best way to get a diagnosis is to find an MD or internal med doctor who is willing to work with us. Any type of doctor can diagnose PP. Mine was done by accident by two doctors (electro cardiologist and renal specialist) working together on my case. (They provoked my symptoms (I nearly died) giving me anesthesia after I told them not to. They did not listen and scoffed at the idea. Then they saw what happened). Again, this can be done based on symptoms (clinically).

It is best to call around until you find a doctor who is willing to work with you, understanding that it may be PP (I talk to the office managers and tell them my story and ask them if any of their doctors would be willing to work with me. Eventually I get a call back. It works well. Usually young doctors looking for a challenge are interested). That way one does not have to waste time, money and energy going from doctor to doctor and being mistreated, abused and humiliated.

Journaling, keeping track of symptoms and triggers, videotaping the episodes, creating a folder with all test results and medical journal articles about PP, and so much more can help to secure a diagnoses.

I have written several blog articles about how to get a diagnosis and I have written books with information in them on how to do it. Links to these are included in this article.


Genetic Diagnosing

Problems Involving Genetic Diagnosis


Most people who have Periodic Paralysis have one or more genetic mutations present at birth. Some genetic testing is available, but there is much that someone who is searching for a diagnosis needs to understand about the genetic testing.

Only about 50% of the genetic mutations/forms of PP have been discovered to date so testing results may most likely be negative, because the form you have has yet to be discovered. In most cases, the testing tends to be limited and does not test for all forms that are known (but some of the labs do seem to be doing a little better at that recently, than in previous years).

Unfortunately, most doctors do not understand the above information. When the tests results are negative, the doctors will diagnose with the mental conditions; conversion disorder or a somatic or functional condition. These are difficult to ever get removed from medical records. Some doctors who may have given a ‘clinical’ diagnosis may then remove the PP diagnosis altogether after seeing the negative results.

Genetic testing is very risky unless you have a doctor who understands the above information.

Free genetic testing does now exist and others in this group will encourage you to do this, but I do not for very good reasoning as explained above and for more reasons, which follow.

As far as the free testing goes, everyone (including and especially your doctors) need to understand the above information that only about 50% of the genetic mutations/forms of PP have been discovered to date so testing results may most likely be negative, but it does not mean that you do not have PP. It just means that the form you have has not been discovered yet or that the testing in most cases tends to be limited and does not test for all forms that are known (but the labs do seem to be doing a little better at that recently, than in previous years).


I must include the following information at this point for everyone’s safety and understanding!

Problem With the Drugs and Big Pharma

WARNING ABOUT THE FREE GENETIC TESTING!!

(I do not want to debate this. This is for informational purposes only.)
(From an article in our ‘Announcements’
)

“Hello All,
I do not do this very often but I feel the need to bring this issue to your attention here, in this group, before you see it somewhere else or in case you have already seen it and are planning to take the test or just wondering about it. PLEASE BEWARE!!! There are several issues that you need to be aware of before you contact these people for free genetic testing.

This company is a 'Big Pharma' company who took over the sales of the latest carbonic anhydrase inhibitor drug that is offered for treating Periodic Paralysis. They are offering free DNA/genetic testing for Periodic Paralysis. They are offering the testing in order to be able to then get you on the drug if you are diagnosed, so they can make the big bucks after charging you or the insurance companies an arm and a leg for a drug that takes a few cents to make. Carbonic anhydrase inhibitors are diuretics that only a few people with PP can take without short term and/or long-term side effects, which can be serious and possibly even cause death.

There are three forms of the drug and they are all the same...carbonic anhydrase inhibitors and they are sulfa based. There are short and long term side effects; even if one can take it in the beginning, the side effects can cause one to stop after awhile and damage can be done to many organs including the kidneys and liver and can create metabolic acidosis, a serious condition that we are already prone to, just by the nature of PP being a mineral metabolic disorder. There are other issues for children (under 18), who should not take these, including growth concerns. Testing has not been done on children.

Many of us in this group and I have had serious effects or have nearly died from trying it or the two other forms of it. (Please read the Blog Article I posted at the end of this article for all the details and history behind this drug as well as the side effects etc, from taking it. There are many links included about the side effects, etc. so be sure to read all of it and the other blog articles I have added to it as well.)

*It is important to understand that there are several forms of PP. Each form has a different way that the paralysis and symptoms occur. One drug cannot possibly work for all of the different forms! 

*(Those of you who do take it and are successful you are lucky, but may not be able to take it forever and still need to work on the natural ways to deal with the side effects and/or the episodes you continue to have, some from the drug itself. Remember, the Periodic Paralysis Network and this Periodic Paralysis Network Support Group was designed and created for those of us who cannot tolerate the drugs or most drugs...this issue is still not up for debate here.)

This medication used to cost what a bottle of aspirin used to cost a few years ago for a month's prescription. The ‘Big Pharma’ company took it and changed the name and now charges about $163.00 for 50 mg tablet. At that cost, they can afford to pay for the cost of the genetic tests!

Limited and Biased Testing

Another important point to know about this testing is that it is very limited. Only CN4A, CACNA1S, KCNJ2 and RYR1 will be tested for...leaving out a significant number of the actual forms that have been discovered so far. This means that it is biased and limited. Up until now only about 50% of the forms of PP have been discovered...so this means that a person has a very slim chance of this testing revealing a form of PP!!

Once you do the testing and the results are negative, the doctors who do not understand this information will then declare that you do not have PP and the 'conversion disorder' diagnosis usually follows. So if you have a 'clinical' diagnosis, based on your symptoms, it is best to stick with it and avoid this testing or any other DNA testing (they are all limited and biased)...rather than to risk losing your diagnosis. This has happened to many of our members.

This PPN group is a Support, Education and 'Advocacy' group. This means, besides providing support and sharing information, we also do what we can to keep you safe in all ways. Therefore we advocate for and discuss only all natural ways to manage your symptoms. We cannot advocate for anyone to safely take any drugs, including the carbonic anhydrase inhibitors with what we know about them and what we understand about PP. Nor do we want to be held responsible legally for advocating for them here. We are not doctors nor do we have doctors associated with us, so we cannot discuss drugs in specifics (such as types or amounts, etc.) or tell anyone to take a drug. Please understand that. We can and do, however, provide the information for you to make informed decisions for yourself, which is what we are doing here.

Hopefully, you can see the complete picture now and after reading the following information I am sharing, before you make any decisions to follow through with this company. I do not want to debate this...this is for informational purposes only... “

Please read the following Blog Article with links to other Blog Articles and medically related articles discussing these drugs:

"New" Drug For Periodic Paralysis $163.80 For One 50mg Tablet!!

***
New as of June 26, 2019

Big Pharma Breaking HIPPA LAW?????

Since writing the above article, some new information on this subject has come to light. I have had members of our PPN Support Group tell me that the pharmaceutical company has approached their doctors and that they are trying to get the doctors to put their patients (our members) on the drug for PP. What our members are asking me is how did the pharmaceutical company obtain their names and those of their doctors?

Who is going into our group and/or other groups and obtaining this information and passing it on??? Or what members of our group might be doing this?

Are other PP Groups providing these names and information??? Please beware of the information you are giving inadvertently in other groups (and check to see if the groups are public.)

If they are this is breaking Federal HIPPA Law 
and the rules of our PPN Support Group !!!

When I was approached no less than ten times by the Pharmaceutical Company and their employees, before and after they introduced the new drug, each seeking information about our members, I declined each time to provide any information except to explain why many of our members cannot, nor should they take any drugs, including theirs, which to my dismay after all the hype of a NEW drug, was another carbonic anhydrase inhibitor!

This is partly why I have been very careful to review new members as they have sought to join our group, until very recently, but I am still very careful with each new member.  It is also, in part, why our group is closed. I have had pharmaceutical agents attempt to join our group!
***

With all of the above considered, as long as everyone understands what they are doing and the risk involved if doctors do not understand when the results are negative, then the testing can be a useful tool for some. We already have enough of us getting conversion disorder diagnoses, and more, without setting us up for more disappointment. Also, one must be aware that some of our members who have received a clinical diagnosis have done the testing later with negative results and have had their clinical diagnoses taken away because doctors do not understand that only some forms of PP are being tested for in the genetic testing. This is a serious issue.

I just want to let everyone understand the risks of the testing and the drugs.

That being said, I have been recently impressed with the number of members who are actually getting a diagnosis through the testing. But, many are not. I just want everyone to be aware of the whole/entire picture of the company behind the free testing and the risks of a negative result and the drug/s they are pushing.

I am sure that some of the members will contact you with the information off of this board about testing, though they should not be recruiting you from this PPN Support Group. It is against our rules Please do not make any decisions about genetic testing without seriously considering ALL of the information in this article.

That being said, if you do the testing and it comes back negative for any forms of Periodic Paralysis, Negative Test Results Do NOT Mean the Periodic Paralysis Does Not Exist.

Please remember: If your testing does come back negative, it does not mean that you do not have a form of PP. As stated above, it simply means that the form you have has yet to be discovered or that they did not test for the form you have. Every doctor needs to understand this, but most do not!

The following articles confirm what I have said and may be helpful to share with a doctor, if testing comes back negative:

"What do the results of genetic tests mean?

The results of genetic tests are not always straightforward, which often makes them challenging to interpret and explain. Therefore, it is important for patients and their families to ask questions about the potential meaning of genetic test results both before and after the test is performed. When interpreting test results, healthcare professionals consider a person’s medical history, family history, and the type of genetic test that was done.

A positive test result means that the laboratory found a change in a particular gene, chromosome, or protein of interest. Depending on the purpose of the test, this result may confirm a diagnosis, indicate that a person is a carrier of a particular genetic mutation, identify an increased risk of developing a disease (such as cancer) in the future, or suggest a need for further testing. Because family members have some genetic material in common, a positive test result may also have implications for certain blood relatives of the person undergoing testing. It is important to note that a positive result of a predictive or presymptomatic genetic test usually cannot establish the exact risk of developing a disorder. Also, health professionals typically cannot use a positive test result to predict the course or severity of a condition.

A negative test result means that the laboratory did not find a change in the gene, chromosome, or protein under consideration. This result can indicate that a person is not affected by a particular disorder, is not a carrier of a specific genetic mutation, or does not have an increased risk of developing a certain disease. It is possible, however, that the test missed a disease-causing genetic alteration because many tests cannot detect all genetic changes that can cause a particular disorder. Further testing may be required to confirm a negative result.

In some cases, a test result might not give any useful information. This type of result is called uninformative, indeterminate, inconclusive, or ambiguous. Uninformative test results sometimes occur because everyone has common, natural variations in their DNA, called polymorphisms that do not affect health. If a genetic test finds a change in DNA that has not been associated with a disorder in other people, it can be difficult to tell whether it is a natural polymorphism or a disease-causing mutation. An uninformative result cannot confirm or rule out a specific diagnosis, and it cannot indicate whether a person has an increased risk of developing a disorder. In some cases, testing other affected and unaffected family members can help clarify this type of result.”
https://ghr.nlm.nih.gov/primer/testing/interpretingresults

Here is another one:

"Genetic diagnosis is often unreliable as only a few of the more common gene locations are tested, but even with more extensive testing 20–37% of people with a clinical diagnosis of hypokalemic periodic paralysis have no known mutation in the two known genes.[7]"
https://en.wikipedia.org/wiki/Hypokalemic_periodic_paralysis

One more:
"Of all individuals meeting diagnostic criteria for HypoKPP, approximately 30% do not have a pathogenic variant identified in either of these known genes."


The Genetic Testing

Invitae looks only for a few known mutations in SCN4A, CACNA1S, KCNJ2 and RYR1. There are many more that exist that are not searched for. (This is the free one.)

Dante does Whole Genome Sequencing but it is expensive and most insurance will not pay for it.


Blog Articles That May Help To Get A Diagnosis







Our Books


Living With Periodic Paralysis: The Mystery Unraveled


The Periodic Paralysis Guide And Workbook: Be The Best You Can Be Naturally (Designed especially to aid in getting a diagnosis)

A Bill Of Rights For Periodic Paralysis Patients

What Is Periodic Paralysis?: A Disease Like No Other



Videos That May Help To Get A Diagnosis


How To Find A Doctor Who Cares Part One


How To Find A Doctor Who Cares Part Two




How To Get A Diagnosis Part One


How To Get A Diagnosis Part Two


How To Get A Diagnosis Part Three


How To Get A Diagnosis Part Four




In Conclusion

A diagnosis is not easy to get, but it is possible. There is nothing wrong with securing a ‘clinical’ diagnosis based on symptoms and characteristics. Genetic testing is possible but many risks come with it if doctors do not understand the limitations of the testing. Negative test results do not mean that a person does not have PP. It only means that the type of PP that the person has was not tested for on that particular test. A positive test result does not mean that one should take the drugs being pushed by other PP Groups and the pharmaceutical company. They can be and are very dangerous to some of us. Just because someone can take the drugs, does not mean that they will always be able to take them. There are short and long term serious side effects from them. The drugs do not stop all of the symptoms and everyone still needs to follow all of the natural ways to manage the PP symptoms anyway, or will need to in the future.

A diagnosis does not actually help a person to manage their symptoms, but it helps us to be protected and to receive help in many ways, like adaptive equipment or being able to get Disability benefits and more. There is little a doctor can do once a diagnosis is obtained except to provide ‘supportive’ care and protect us in emergency situations. We must do the work ourselves to manage our symptoms in all natural ways and methods. We have the information to do that here at the Periodic Paralysis Network in our Support Group, our Blog Articles and our books.

I hope this information is helpful and I hope you will be able to get a diagnosis sooner rather than later. I am sorry for what you are going through. I understand since it took me over 50 years to get a diagnosis. I was there once. Do not give up!!!

The best news I have for you is that you do not need a diagnosis in order to start feeling better and managing your symptoms. All you have to do is follow our methods and ways to manage your symptoms to be the best you can be naturally!!



Until Later...


Saturday, May 11, 2019

Not Everyone With Periodic Paralysis Needs To Be Taking Potassium Supplementation

NOT EVERYONE WITH PP NEEDS TO BE TAKING POTASSIUM SUPPLEMENTATION
Hello All....This is long...but very important!!


ABOUT POTASSIUM

There NEEDS TO BE SOME CLARIFICATION ON THE USE AND NEED OF POTASSIUM IN RELATIONSHIP TO THE DIFFERENT FORMS OF PERIODIC PARALYSIS (PP)...AND METABOLIC ACIDOSIS. PPN exists to provide Support, Education and ADVOCACY to all individuals with the varying forms of Periodic Paralysis.This means we need to advocate for your medical safety.....

I have written much about this...I will try to clarify as simply as I can and add some information from other Blog Articles and Notes from our PPN Support Group...

NOT EVERYONE WITH PP NEEDS TO BE TAKING POTASSIUM.

Unless you know exactly that your levels of potassium are low (at any given moment), you may not need potassium supplementation. Potassium shifts very quickly and can be in normal ranges right after the shift and back to normal by the time a blood test is done. If it us is in normal ranges....potassium may not be needed. Taking potassium when it is not needed it can shift into hyperkalemia...and cause different symptoms and make one worse....pain, cramping, muscle tightness are indications of high potassium. Taking large amounts of potassium can be very harmful, unless it is proven that it is needed. Using potassium readers is the only way to know for sure what the level of potassium is at any given moment...a test taken last week or last month has no bearing on what it is at this very moment. IF YOUR SYMPTOMS ARE WORSE AFTER INCREASING POTASSIUM, IT MAY BE THE INCREASE OF POTASSIUM CAUSING THE WORSE SYMPTOMS.

NOT ALL FORMS OF POTASSIUM ARE THE SAME. THERE ARE DIFFERENT TYPES OF POTASSIUM FOR DIFFERENT ISSUES ACCOMPANYING YOUR SYMPTOMS.


TYPES OF POTASSIUM

When considering which type of potassium to use, it is important to understand the most common types; potassium bicarbonate,potassium citrate and potassium chloride. Potassium bicarbonate is a salty substance with no color or smell and it neutralizes acidity. Potassium citrate is also a salty substance. It is potassium bicarbonate, which has been combined with citric acid for faster absorption. It reduces acidity. Potassium chloride is also a salty substance created from a combination of potassium and chlorine.It will increase the acidity in the body.

It comes in many forms which include, salts, powders, liquid, and tablets. Some tablets may be released overtime or some are easily dissolved. Liquid forms need to be diluted in water.The soluble tablets ad powder or salt forms need to be dissolved in water.Tablets should be swallowed whole with 8 ounces of water after meals.

How does someone know which type and form is best for him or her? We are not medical doctors so we avoid offering advice about the type of potassium supplement to use. That needs to be discussed with your trusted medical adviser. However, that being said, the various forms and types are discussed here for a better understanding and decision-making.

After researching and knowing that I have chronic metabolic acidosis (Most of us with PP do have this), I chose to use potassium bicarbonate because it neutralizes the acidity in my body. I use the salt form because and I can dilute it in water for quick absorption. I take it when my potassium levels are low. I must be careful with the amount I take because I easily swing into high potassium levels.

Although most individuals with Periodic Paralysis will get prescriptions for potassium, some may chose or need to purchase their own potassium supplements. If you purchase your own form be sure to use natural sources of potassium from a reliable natural organic source.

ONLY INDIVIDUALS WITH HYPOKALEMIC PERIODIC PARALYSIS AND THYROTOXIC PERIODIC PARALYSIS MAY NEED TO TAKE POTASSIUM SUPPLEMENTATION. (This should be done with the knowledge, instruction and direction of your doctor.)

Many individuals with Periodic Paralysis take potassium, but many do not, nor should they. It is best to remember that not all people with PP actually need to take potassium supplements.

Many of us shift only in normal ranges. All forms can shift only within normal levels but the ones most prone to this are Normokalemic Periodic Paralysis, and Andersen-Tawil Syndrome (ATS). (Those with ATS shift between low, normal and high depending on the triggers). Those with Hyperkalemic Periodic Paralysis shift into high levels of potassium so if we take potassium it causes us major symptoms and paralysis. Still others of us shift high and low, so we should not take it unless we know we are low and know it for sure and monitor it closely. Potassium is a very individual issue for each of us.

UNLESS YOU HAVE A GENETIC DIAGNOSIS, IT MAY NOT BE POSSIBLE TO BE SURE WHAT FORM YOU HAVE UNLESS THE SYMPTOMS ARE CLOSELY RECORDED AND STUDIED. WE HAVE FORMS, CHARTS, ETC. TO HELP FIGURE THIS OUT.

EVERYONE HAS THEIR OWN LEVEL OF POTASSIUM THAT IS NORMAL FOR THEM.

An individual with Periodic Paralysis may have his or her own individual levels of potassium at which symptoms or paralysis occurs. What may be normal ranges for someone may be high for another. Using a potassium reader to discover one’s high, normal and low ranges is suggested, for better treatment.

Our own "NORMAL" levels of potassium vary greatly. Some of us have "normal" levels in the 5.0's while others may be normal in the 3.0's. This depends on many things, but most likely the form of PP that you have and the way it manifest in you, individually. Just because a doctor (who probably does not understand this feature of PP) wants you to be at 4.5..that actually may not be right for you. Your symptoms are your clues...
(The numbers below are related to normal individuals)


YOUR SYMPTOMS ARE CLUES TO WHETHER YOU ARE IN LOW OR HIGH POTASSIUM.
(Some may cross over)


HYPERKALEMIC PERIODIC PARALYSIS:

Hyperkalemic Periodic Paralysis Hyperkalemic Periodic Paralysis, also known as Gamstorp Disease, accounts for about 15 to 20% of all forms of Periodic Paralysis. If an individual has Hyperkalemic Periodic Paralysis he or she becomes partially or fully paralyzed intermittently based on the way the body controls sodium and potassium levels in the cells. It is associated with high levels of potassium (hyperkalemia) during paralytic episodes. When potassium shifts into higher ranges in normal individuals, it is called hyperkalemia. High potassium levels in the blood will occur for anyone and a myriad of symptoms may be experienced and can be dangerous, even deadly. If an individual has Hyperkalemic Periodic Paralysis and potassium shifts into higher ranges, he or she can and will experience a combination of the same myriad of symptoms as well as paralysis and can be equally as dangerous and deadly. When potassium levels are at a slightly elevated level there may be no symptoms. At a moderately higher level, which is usually between 5.5 and 6.5 mEq/L, there may be some symptoms involving muscles, digestion, kidneys, electrolyte balance, the liver and the heart. Potassium levels above 6.5 mEq/L are very serious and usually require medical attention.

Muscles: Fatigue, weakness, pins and needles, tingling or numbness in the extremities, muscle contraction, muscle rigidity, muscle cramps, muscles stiffness, muscle twitching, muscle cramping, reduced reflexes, muscle contraction involving tongue, tightness in legs, strange feeling in legs.

Digestion: Discomfort, nausea, vomiting, stomach cramps, diarrhea, vomiting.

Heart: Palpitations, chest pain, irregular heartbeat, slow heartbeat, weak pulse, absent pulse, heart stoppage, small P waves, tall T waves, QRS abnormality, P wave abnormality, QT lengthening, fast heartbeat.

Kidneys: Breathing problems, wheezing, shortness of breath, fast breathing, feeling hot, low blood pressure.

Liver: The brain function becomes affected: Irritability, sleepiness, confusion, seizures, and loss of consciousness.

Paralysis: Episodic muscle weakness, episodic partial paralysis, episodic total paralysis.

Laboratory blood changes: Elevated blood potassium, serum sodium level elevated, Serum CPK (creatine).

Laboratory urine changes: Elevated urine pH level.


HYPOKALEMIC PERIODIC PARALYSIS:

Hypokalemic Periodic Paralysis Hypokalemic Periodic Paralysis, also known as Westphall Disease, is the most common form of Periodic Paralysis accounting for about 70% of all cases. If an individual has Hypokalemic Periodic Paralysis he or she become partially or fully paralyzed intermittently. As already stated, the paralysis results from potassium moving from the blood into muscle cells in an abnormal way. It is associated with low levels of potassium (hypokalemia) during paralytic episodes

When potassium shifts into lower ranges in normal individuals, it is called hypokalemia. Low potassium levels in the blood will occur for anyone and a myriad of symptoms may be experienced and can be dangerous, even deadly. If an individual has Hypokalemic Periodic Paralysis and potassium shifts into lower ranges, he or she can and will experience a combination of the same myriad of symptoms as well as paralysis and can be equally as dangerous and deadly. When potassium levels are low, which is usually between 2.5 to 3.5 mEq/L, the following symptoms can occur: tiredness, pain in the muscles, cramping, upset stomach, constipation, lightheadedness, depression, mood swings.

Potassium levels below 2.5 mEq/L affect many functions of the body including the muscles, digestion, kidneys, electrolyte balance, the liver and the heart.

Muscles: fatigue, pain in the joints, muscle weakness, muscle weakness after exercise, muscle stiffness, muscle aches, muscle cramps, muscle contractions, muscle spasms, muscle tenderness, pins and needles sensation, eyelid myotonia (cannot open eyelid after opening and then closing them).

Digestion: Upset stomach, loss of appetite, vomiting, constipation, diarrhea, bloating of the stomach and full feeling in the stomach, blockage in the intestines called paralytic ileus.

Heart: Anxiousness, irregular and rapid heartbeat, angina, prominent U waves, inverted or flattened T waves, ST depression, elongated PR interval.

Kidneys: Severe thirst, increased urination, difficulty breathing, too slow or shallow breathing, lack of oxygen in the blood, sweating, increased blood pressure, metabolic acidosis.

Liver: The brain function becomes affected: Irritability, decrease in concentration, lack of clear thinking, confusion, slurring of speech, seizures.

Paralysis: Episodic muscle weakness, episodic partial paralysis, episodic total paralysis episodic flaccid paralysis (limp muscles, without tone).

Laboratory blood changes: Increased number of neutrophils in blood, increased number of white blood cells in the blood, reduced number of eosinophils in blood, increased number of lymphocytes in blood, low blood sodium, low blood potassium, elevated Serum CPK (creatine).

Laboratory urine changes: Excess protein in urine, excess sugar in the urine, excessive acetone in urine, and presence of renal casts in urine.

An individual with Periodic Paralysis may have his or her own individual levels of potassium at which symptoms or paralysis occurs. What may be normal ranges for someone may be high for another. Using a potassium reader to discover one’s high, normal and low ranges is suggested, for better treatment.

Factors, which can trigger attacks, are: Excessive carbohydrates, alcoholic beverages, sodium/salt, viruses, certain medications, epinephrine, cold, anesthesia, excitement/fear, exercise, and rest or sleep (all phases).

Attacks of paralysis may be reduced by: Eating high potassium foods, staying warm, staying well rested, staying hydrated, avoiding drugs that decrease potassium levels, avoiding known triggers such as stress, exercise, carbohydrates, and salt. Some off-label drugs, which can be effective for treating the symptoms, are available for some individuals with Hypokalemic Periodic Paralysis but they should be used with extreme caution due to serious side effects.

YOUR SYMPTOMS MAY BE FROM METABOLIC ACIDOSIS OR METABOLIC ALKALOSIS NOT A DROP OR INCREASE IN POTASSIUM.

Because Periodic Paralysis is a MINERAL METABOLIC DISORDER we are prone to chronic Metabolic Acidosis (too acidic or Metabolic Alkalosis too alkaline). Our symptoms may actually be due to this not actual potassium shifting.

SYMPTOMS OF METABOLIC ACIDOSIS:

"Some of the more common symptoms of metabolic acidosis are muscle weakness, bone and muscle pain, headache, chest pain, tachycardia, heart palpitations, abdominal pain, rapid breathing, shortness of breath, confusion, drowsiness, a lack of energy and paralysis for persons with Periodic Paralysis. If metabolic acidosis becomes severe it can lead to shock (a lack of an appropriate flow of blood in the body) or death. However, the symptoms of metabolic acidosis are sometimes not very obvious or specific, depending on the cause. It should be noted that in some individual’s metabolic acidosis could be mild and ongoing (chronic).

In chronic metabolic acidosis an individual’s bones and kidneys are affected. When potassium shifts in the body, calcium carbonate from the bone is released. This causes a loss of the bone crystals leading to osteoporosis. When the kidneys are affected and this can be seen by the formation of kidney stones. "

So it is especially important to maintain that 70/30 balance and it can be done with a pH diet. We may eat some of those things that are more acidic, just remember to keep the 70/30 balance.


SYMPTOMS OF METABOLIC ALKALOSIS:

Confusion (can progress to stupor or coma)
Hand tremor
Lightheadedness
Muscle twitching
Nausea, vomiting
Numbness or tingling in the face, hands, or feet
Prolonged muscle spasms (tetany)


THERE ARE DIFFERENT TYPES OF POTASSIUM FOR DIFFERENT ISSUES ACCOMPANYING YOUR SYMPTOMS.

(See above)


Until Later...

Saturday, March 30, 2019

I Repeat: No Drugs, People With PP Should Not Even Take Over-The-Counter Drugs

I Repeat: 

No Drugs, People With PP Should Take No Drugs, Not Even Over-The-Counter Drugs


This subject comes up every day, every time I add a new person to our Periodic Paralysis Network Support Group. I tell them that we do not discuss drugs because they are out worst triggers and for liability reasons (we do not want to be sued). I tell them that we only discuss them in the terms of how harmful they can be for us. This is because PP is a mineral metabolic disorder. This means that we must keep our body in total balance and drugs cause imbalances for us, among other issues. 


We discuss only natural ways to manage our symptoms. This information can be found in other Blog Articles and our books and is discussed daily on the Support Group.

Today, a new member posted about a reaction she had to a simple aspirin. I wanted to respond and remembered what happened to me when I took a simple Alleve/Naproxen, knowing better at the time, but wanted some relief from some extreme pain I was experiencing. I did a little research to remind myself of the ingredients in Alleve and why I thought I had a reaction to it. I was shocked at what I found about the side effects, that are listed for medical professionals, but not necessarily for the consumer. I want to share my response. It is very important for people with Periodic Paralysis. This is just one example of why we should not take drugs. This is just a simple over-the-counter drug! Imagine the issues related to those that are not 'simple' drugs!

My Response:

All of us with PP must be extremely careful of anything we put in our mouth....even a simple over-the-counter Alleve!!

I took an Alleve (Naproxen) once a few years ago when I was in more pain than usual. (I have been in body wide pain since I was a teenager...so my pain was really bad that day...I do not ever take anything for it...I just live with it. Over the years, the prescriptions I tried caused all types of issues from passing out, to ataxia, to paralysis, etc ) I was hoping that it would not cause a problem...within an hour I was in full body, total paralysis lasting for hours. Later, when I was able to move again, I checked the label and noticed that it had sodium in it. I assumed it was the sodium level that was too much.

However, I just checked/researched for writing my response and found the following list of things that can happen from a simple Alleve tablet...just for normal people...imagine what I thought just now as I saw "HYPERKALEMIA" as a side effect of it!!!! And MUSCLE WEAKNESS!!!!! And SOMETIMES FATAL!!!!! No wonder that happened to me!! With ATS (Andersen-Tawil Syndrome) I have problems with low or high potassium or even if it just shifts while in normal ranges!!!

Check it out for yourself...This list is what health professionals see, but not what the general public sees. Scroll down to 4.8 Undesirable effects.

All of us will PP must be extremely careful of anything we put in our mouth...even a simple Alleve!! I don't make this stuff up...I just try to pass the truth along to keep everyone safe!! Those of us with PP should not take drugs of any form including over-the-counter remedies!



Until Later...

Tuesday, March 26, 2019

Sunday, February 10, 2019

Providing HOPE to over 825 members!!





If you have a form of Periodic Paralysis or think you may have Periodic Paralysis, please feel free to join us on our
Periodic Paralysis Network Support Group!!
https://www.facebook.com/groups/periodicparalysisnetworksupportgroup/

Thursday, February 7, 2019

Happy Eighth Anniversary!!! PPN 2019



Happy Eighth Anniversary to PPN!!!






Our Mission Statement: The Periodic Paralysis Network exists to assist individuals who have Periodic Paralysis with support, education and advocacy and by providing a hands-on approach to understanding the disease, getting a proper diagnosis, managing the symptoms in all natural ways, and assisting their caregivers and family members.
Our Website, other discussion groups/boards, books and activities available through PPN:
The following are the services and features of our PPN forum:
PPN Books:
"Living With Periodic Paralysis: The Mystery Unraveled"
"The Periodic Paralysis Guide And Workbook: Be The Best You Can Be Naturally"
"A Bill Of Rights For Periodic Paralysis Patients"
"What Is Periodic Paralysis?: A Disease Like No Other"
Our books are found on Amazon.com:
and our PPN website:
PPN Blog: We have over 150 blog articles written about all aspects of Periodic Paralysis. The Blog was created to provide information to all of our members, as well as, family members, friends and medical professionals who want to know more about Periodic Paralysis. http://livingwithperiodicparalysis.blogspot.com/
PPN Website Facebook Page: Our PPN Facebook Page is designed to share more general information and articles related to Periodic Paralysis, Chronic Illness and Invisible Illness. It is also designed to share with family members and friends to provide them with a better understanding about PP, chronic and invisible illness. https://www.facebook.com/PeriodicParalysisNetwork
Email: periodicparalysisnetwork@gmail.com
Video about Periodic Paralysis: https://www.youtube.com/watch?v=YSRVOkdFRQc
Periodic Paralysis World Awareness Day Page: This page was created to bring awareness to the world about Periodic Paralysis. We have declared and observe 'Periodic Paralysis World Awareness Day' February 7th each year! https://www.facebook.com/PPAwarenessDay/
Please check out our PPN Members World Map: Let us know if you want to be added to our map! http://www.multiplottr.com/?map_id=55083
Thank you all for your support
Calvin Hunter and Susan Q. Knittle-Hunter ~ Co-Founders, Co-Creators, Co-Managers
Periodic Paralysis Network, Inc. ~ Sequim, Washington U.S.A.
All rights reserved. Copyright © 2019 Periodic Paralysis Network ............................................................................................................