Serene Forest

Sunday, April 25, 2021

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.

 It is essential for each and every one of us 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

Sunday, February 7, 2021

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

Thursday, December 10, 2020

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...

Thursday, November 12, 2020

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!!


Monday, August 31, 2020

'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:

Wednesday, August 19, 2020

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).



Until later...

Monday, August 17, 2020

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.

Wednesday, August 12, 2020

IEP (Individualized Education Plan) or 504 Plan for Periodic Paralysis



For all of the parents who are sending their children with PP back to school, this may be helpful. It is written for those in the USA and to help to outline and write either an IEP (Individual Education Plan) or a 504 Plan (both legal and binding documents in the USA). I am a retired Special Education Teacher. 

(This may or may not be applicable at this time in dealing with Covid-19.)

I wrote this for a parent awhile back...I have meant to post it as a Blog Article, but have never quite finished it before...I hope this can be helpful.

 

IEP (Individualized Education Plan) or 504 Plan for Periodic Paralysis at School

 

Each plan is individualized to your child's needs, accommodations and restrictions. The biggest difference in them is how it is funded and who will be in charge of the plan.

The best place to start is to have a copy of the information about your child’s form of Periodic Paralysis and how it affects him or her. No one will know what it is or be able to understand it without some background information.

Next, you will need to come up with a list of the needs, accommodations and restrictions, etc that are necessary for your child. You can do this with your doctor or come up with them and then ask the doctor to put them on his/her letterhead for you. The school will have a better time believing and following through this way. This should include the issues related to his heart, breathing, blood pressure, cognitive issues, muscle weakness, and/or paralysis as the potassium shifts.

How to recognize an episode? What to do in an emergency? Teachers and nurse should be trained to recognize signs of an episode and know what to do.

Triggers and how/what to avoid? If any type of exercise causes an episode, then he or she should not have PP, or can he do some simple things like walking, but no running or swimming?

Food restrictions, or does he or she need to eat and or drink something every few hours?

Does he or she need more time to get from class to class? Does he or she need help to get from class to class? Should he or she have a friend with him at all times in case he or she goes into an episode? Elevator rather than walking up and down stairs? Can walk from class to class but not out to the football field?

Due to the time length of episodes or abortive attacks, does he or she require more time to complete assignments? Or does he or she need home schooling/instruction from time to time? Do the district days of absences allowed need to be changed? Days added for him?

Does he or she need adaptations such as using a computer rather than writing with a pencil or pen or doing his or her work orally or verbally?

Can he or she carry his or her books from class to class? Too many books at a time? Can he visit his or her locker more often or leave books and supplies in classroom with the teacher?

Does he or she need a special chair or wheelchair at times in which he or she can recline due to weak trunk muscles?

Does speech/talking in the classroom need to be limited to short periods of time due to weak mouth and throat muscles?

Eyes/eyelids may become too weak to read, etc. Can lectures be recorded or can a friend share notes?

Another important issue to consider is whether the child's symptoms may require him or her to remain at home permanently using home schooling, or attending school remotely or possibly a combination of the two.

 

**Purchasing a copy of our book, What is Periodic Paralysis? A Disease Like No Other and completing your child’s individual, important information related to Periodic Paralysis at the end of each chapter is an excellent way to share the data and instruction for the teachers, nurses and administers. This is why this book was created, for sharing and teaching others about Periodic Paralysis.

The following are example pages from the book: