The Periodic Paralysis Network Support Group:

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


The Periodic Paralysis Network Website:

periodicparalysisnetwork.com

True Periodic Paralysis or Periodic Paralysis-like?

 

True Periodic Paralysis or Periodic Paralysis-like?

A question was asked this week in the PPNI Support Group about the connection to Periodic Paralysis and kidney disease and another question was asked about certain drugs causing Periodic Paralysis. I would like to explain this here to make sure all are able to see the answer.

Periodic Paralysis (PP) all forms: Hypokalemic PP and some forms of Thyrotoxic PP (symptoms from low potassium); Hyperkalemic PP and Paramyotonia Congenita PMC (symptoms from high potassium); Normokalemic PP (symptoms within normal levels of potassium); and Anderson-Tawil Syndrome ATS (symptoms from low, high and normal ranges of potassium) are all ion channelopathies, also called mineral metabolic disorders and are the result of genetic mutations and only genetic mutations. This means you have a predisposition to the medical condition due to faulty genes. Because of the faulty genes, when the body is exposed to certain conditions such as heat, cold, pain, drugs, anesthesia, IVs, food additives, fillers and dyes, chemicals, stress, different phases of sleep, exercise, exertion and much more, the symptoms of muscle weakness and paralysis are triggered. If this is not the case...you do not have Periodic Paralysis...you have a periodic paralysis-like condition.

 You may have hypokalemia (low potassium) or hyperkalemia (high potassium) from other things, that cause symptoms like those of us with Periodic Paralysis, but the real cause of the symptoms is not from PP, but possibly a kidney issue, diabetic ketoacidosis or taking beta-blockers or other drugs and much more.

That being said, if you have been genetically tested and the results were negative and the doctors say you do not have PP it may just mean that they did not test for the form you have. Only about 50% of the genetic mutations for the varying forms of PP have been discovered as of yet. That means only 50% of us could have a positive test with a known mutation. The testing that is being done for free only tests for a few of the forms of PP. They are looking for specific ones. This means the likelihood of getting a positive diagnose through genetic testing is even less than 50%. So a negative result means that they did not test for the form you likely have, that was not yet been discovered or not tested for. So, we do not get true Periodic Paralysis from anything other than being born with the genetic mutation for it, but it may not yet have been discovered or tested for.

Certain drugs, do not cause it...they trigger our symptoms if we have the genetic mutation. Kidney disease does not cause PP, but it may and does affect our kidneys and we can have kidney disease existing with PP. Certain medical conditions like thyroid conditions can cause low potassium and symptoms like those of us with PP, but they do not cause the mineral metabolic disorder known as Periodic Paralysis.

 Each and every one of us needs to understand just what Periodic Paralysis is and why we have it. We have it, a mineral metabolic disorder, also known as an ion channelopathy, from a genetic mutation that affects the way potassium flows in and out of our muscle cells, which is affected and triggered by many things, but not caused by them.

 Below are articles with lists of causes of hyperkalemia and hypokalemia.

https://www.mayoclinic.org/symptoms/hyperkalemia/basics/causes/sym-20050776

https://www.mayoclinic.org/symptoms/low-potassium/basics/causes/sym-20050632

Providing HOPE for Ten Years!!

 

Today is the 10th anniversary of Periodic Paralysis World Awareness Day. We chose this date because February 7th 2011 is the day I got my Andersen-Tawil Syndrome diagnosis, after over 50 years of symptoms and searching for answers. We then created our Periodic Paralysis Network Forum!!

https://livingwithperiodicparalysis.blogspot.com/2020/07/providing-awareness-of-periodic.html

Providing HOPE for over 1,100 members!

 

The Digestive Tract and Periodic Paralysis

 

The Digestive Tract and Periodic Paralysis

We were asked in our Periodic Paralysis Network Support Group today if anyone with Periodic Paralysis (PP) has ongoing digestive problems. My answer is YES; I do have severe gastric/digestive issues, as do many of us in this group with Periodic Paralysis. It seems the PP can affect our digestive tract. We can have issues from acid reflux, constipation and gastritis to paralytic ileus* (malfunction of the muscles in the intestine) and the acidity issue can also be related to PP because we tend to have chronic metabolic acidosis of which acid reflux can be a symptom.

I have ended up in the ER/hospital twice in the past three years with digestive issues and am going through the cycle again right now. Over one year's time, my daughter was in the hospital 9 times with the longest stay 40 days and she lost 90 pounds during that year, dealing with paralytic ileus and Cyclic Vomiting Syndrome (CVS).

We control our acid reflux with a pH balanced diet which keeps our acidity levels in balance. Diet and managing our potassium/electrolyte levels is especially important for those with PP for many reasons, to include managing our digestive tract, from beginning to end.

*“Paralytic ileus is the occurrence of intestinal blockage in the absence of an actual physical obstruction. This type of blockage is caused by a malfunction in the nerves and muscles in the intestine that impairs digestive movement. Causes of paralytic ileus include electrolyte imbalances… "

https://www.healthgrades.com/right-care/digestive-health/paralytic-ileus#:~:text=Paralytic%20ileus%20is%20the%20occurrence,intestine%20that%20impairs%20digestive%20movement.

https://livingwithperiodicparalysis.blogspot.com/2013/12/periodic-paralysis-and-metabolic.html

Until later...

Happy 7th Anniversary to Our Blog!!

 

Happy 7th Anniversary to Living With Periodic Paralysis: The Blog!!! 

It has been 7 years since we posted our first Blog Article!! Since that day we have had over 156,497 total page views!! We now have nearly 180 articles!!

https://livingwithperiodicparalysis.blogspot.com/

'What Is Periodic Paralysis? A Disease Like No Other' ~ Fourth Anniversary!

 Hello All,

This week we celebrate the fourth anniversary of publishing our fourth book, "What Is Periodic Paralysis?: A Disease Like No Other."

I am including some information about it; the Table of Contents and the Preface.

Table of Contents

About A.S.E.A. vi

Preface viii

Acknowledgments ix

Introduction 13

What Is Periodic Paralysis? 17

What Are The Symptoms Of Periodic Paralysis? 29

What Are The Triggers Of Periodic Paralysis? 43

Relieving The Symptoms Of Periodic Paralysis 53

Handling The Episodes Of Periodic Paralysis 65

Diagnosing Periodic Paralysis 77

Complications Of Periodic Paralysis 91

Prognosis For Periodic Paralysis 121

Conclusion 129

Resources 140

About the Authors 141

Preface

The Preface of a book gives the reader information about how the book came to be, where the idea originated. In the case of this book, my own family and the members of the ‘Periodic Paralysis Network Support, Education and Advocacy Group’ inspired, What Is Periodic Paralysis? A Disease Like No Other.

The members, now over 900 (update) worldwide, share daily their heart-breaking and frustrating experiences. They relate frightening symptoms, years of painful and costly testing, a lack of being believed and 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. But to add insult to injury, this same treatment is also received from family members and friends who also tend to disbelieve the existence of the rare medical condition, Periodic Paralysis.

This booklet has been designed and written to share with family members, friends, teachers, coworkers and others who should know about and may want to know, the truth about this cruel disease.

For these reasons this booklet answering the question: “What is Periodic Paralysis?” has been created and written, by the PPN. The information used to describe and explain this disorder is referenced and can be found at the Periodic Paralysis Network, Inc. Website, Blog Articles, Discussion Groups and Books, to include: Living With Periodic Paralysis: The Mystery Unraveled, The Periodic Paralysis Guide And Workbook: Be All You Can Be Naturally, and A Bill Of Rights For Periodic Paralysis Patients.

It can be purchased from our PPNI Website Bookstore:

https://periodicparalysisnetwork.com/bookstore/

Or at Amazon:

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

Those of us with Periodic Paralysis are each totally individual and unique!!

Those of us with Periodic Paralysis are each totally individual and unique!!

No two of us are exactly alike. We each experience our PP differently. Our episodes and symptoms are individual and unique to each of us.

Our episodes are based on three things: the form or forms of PP we have, the trigger or triggers causing them and any other co-existing conditions we may have.

So our episodes will happen as often as we introduce our triggers to ourselves.

They will last as long as that trigger somehow determines (some triggers may cause short episodes, some longer) and be as severe as that trigger determines, for instance, they may be as simple as a twitch of the eyelid for a few hours, a numbness or tingling of an arm or a full, total-body (from head (including the inability to see) to toes), extreme episode with heart, blood pressure, breathing and choking lasting many hours. (I have had these lasting 7 hours...most were about 4 hours several times a day.)

If we have coexisting conditions symptoms and episodes can be more severe, depending on how the trigger also affects the other condition and how the coexisting condition affects the PP.

It is usually quite easy to detect the triggers/causes. If you keep a journal or keep track by writing down everything you do, eat, drink and more, and then keep track of when your symptoms occur and what they are, you will see a pattern emerge and be able to figure it out. You can eliminate or modify the triggers to eliminate the episode/symptoms.

I went from 4 or 5 severe episodes a day to 1 or 2 a year, much less severe and lasting a much shorter time (except for at night) by charting everything, eliminating the trigger/s, changing my diet and by staying in total balance.

None of us will have the same triggers, the same types of episodes, the same number of episodes and the same length and degree of episodes. Each of us is very unique...this even applies to those in the same family. My family members with PP are totally different in how our episodes present themselves and our triggers are not the same. We each have different coexisting conditions as well.

The following Blog Article has a group of articles and links to help each person understand how to create their own Individual Management Plan (IMP).

https://livingwithperiodicparalysis.blogspot.com/2017/10/how-to-manage-our-periodic-paralysis.html

Until later...

Our New and Updated Periodic Paralysis Network Inc Website

 

We are previewing our new and updated Periodic Paralysis Network Inc Website today!! Please go in and have a look. We are now offering our books in Ebook format in our new book store, as requested. Our Google Blogger can now be accessed through the website as well. We have a new Announcement Page to keep everyone updated. More new features are in the planning stage. Check out the Menu Bar for information about the PPNI Company and Website.

www.periodicparalysisnetwork.com

Providing HOPE to over 1,050 members!!!

 

Periodic Paralysis Network Support Group