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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.

 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

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