Serene Forest

Monday, February 7, 2022

Happy 11th Anniversary Periodic Paralysis Network!!!

 Happy 11th Anniversary Periodic Paralysis Network!!!

Providing HOPE to individuals with Periodic Paralysis for eleven years!!!

Osteoporosis and Periodic Paralysis

 Osteoporosis and Periodic Paralysis

Periodic Paralysis is a 4th Class Mineral Metabolic Disorder.

"In general, the genetic metabolic disorders are caused by genetic defects that result in missing or improperly constructed enzymes necessary for some step in the metabolic process of the cell.

The three largest classes of metabolic disorders are:

Glycogen storage diseases -- disorders affecting carbohydrate metabolism
Fatty oxidation disorders -- disorders affecting the metabolism of fat components
Mitochondrial disorders -- disorders affecting the mitochondria which are the central "powerhouses" of the cells.

**A fourth class, the channelopathies (some of which cause periodic paralysis and/or malignant hyperthermia) could be considered to be metabolic disorders as well, though they are not always classified as such. These disorders affect the ion channels in the cell and organelle membranes, resulting in improper or inefficient transfer of ions through the membranes." **

How does this relate to osteoporosis?

Periodic Paralysis is a mineral metabolic disorder, due to that, chronic metabolic acidosis can develop in many of us with Periodic Paralysis. As such, it can affect our bones.

"Metabolic acidosis may effect changes in bone by directly inducing dissolution of bone,..."

"...As a consequence, in some patients with normal renal function, osteoporosis and osteomalacia have been reported that are linked in part to metabolic acidosis. ..."

Metabolic acidosis has been shown to lead to calcium loss from bone (78), to inhibit osteoblast function and stimulate osteoclast activity (910), and to impair bone mineralization (11).”

“Metabolic acidosis increases urine calcium excretion without an increase in intestinal calcium absorption, resulting in a net loss of bone mineral.”,net%20loss%20of%20bone%20mineral.


 When your electrolyte levels are out of balance (Low)…, you experience an acid/base (pH) imbalance. Specifically, your pH levels decrease, creating metabolic acidosis. Symptoms include confusion, fatigue, headache and increased heart rate. If your electrolyte levels are out of control (High)…, your pH levels increase, causing metabolic alkalosis...”,headache%20and%20increased%20heart%20rate.

Here is one study that touches on the relationship between potassium levels and osteoporosis (from Korea):

The western diet including high meats and cereal grains produces a low-grade metabolic acidosis [11]. The continual release of alkaline salts from bone for acid-base balance would cause bone loss and osteoporosis [13]. Fruit and vegetable intake could balance this excess acidity by providing alkaline salts of potassium [14]. Thus, the alkaline potassium salt is thought to prevent bone resorption for pH homeostasis [15]. In addition, increasing potassium intake increases urinary retention, reducing loss of calcium and thus creating a more positive calcium balance and inhibiting bone resorption [16,17]. The potassium bicarbonate, but not sodium bicarbonate, reduced urinary calcium excretion in healthy men [18], and the potassium citrate reduced urinary calcium excretion in men with uric acid nephrolithiasis [19]. It suggests that the positive effect of potassium could be through either suppressing calcium resorption or bone mineral dissolution or both [20].”


If people with Periodic Paralysis, experience low potassium for long periods of time, without a diagnosis or being wrongly diagnosed or mistreated, osteoporosis can develop. Thus it can be a complication related to Periodic Paralysis. 

Friday, January 21, 2022


The Periodic Paralysis Network Support Group:

The Periodic Paralysis Network Website:

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 do not have Periodic 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.

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!!

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… ",intestine%20that%20impairs%20digestive%20movement.

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
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...