Happy 11th Anniversary Periodic Paralysis Network!!!
Providing HOPE to individuals with Periodic Paralysis for eleven years!!!
Monday, February 7, 2022
Happy 11th Anniversary Periodic Paralysis Network!!!
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 (, ), to inhibit osteoblast function and stimulate osteoclast activity (, ), and to impair bone mineralization ().”
“Metabolic acidosis increases urine calcium excretion without an increase in intestinal calcium absorption, resulting in a net loss of bone mineral.”
”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...”
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 . The continual release of alkaline salts from bone for acid-base balance would cause bone loss and osteoporosis . Fruit and vegetable intake could balance this excess acidity by providing alkaline salts of potassium . Thus, the alkaline potassium salt is thought to prevent bone resorption for pH homeostasis . 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 , and the potassium citrate reduced urinary calcium excretion in men with uric acid nephrolithiasis . It suggests that the positive effect of potassium could be through either suppressing calcium resorption or bone mineral dissolution or both .”
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
Sunday, April 25, 2021
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
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!!
Friday, January 22, 2021
Thursday, December 10, 2020
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… "
Thursday, November 12, 2020
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
Wednesday, August 19, 2020
Those of us with Periodic Paralysis are each totally individual and unique!!