Frequently Asked Questions

What is Periodic Paralysis (PP)? PP is a very rare medical condition that is not like any other disorder. It is very unique; very different. It is not a neurological disease, nor an autoimmune disease, nor a disease of the mitochondria, nor an endocrine myopathy, nor is it a form of Muscular Dystrophy. It is in a category all of its own. It is a mineral metabolic disorder, also known as a channelopathy. It needs to be treated in non-conventional ways. This means it must be treated differently than any other disease or illness.

Where does it come from? We are born with Periodic Paralysis. We inherit it from one or both of our parents. It develops from a faulty gene, also known as a genetic mutation.

Why me? Unfortunately, you have Periodic Paralysis because you inherited the genetic mutation for it from one or both of your parents.

When does it show up? The symptoms of Periodic Paralysis may show up or begin at any age. There may be symptoms at birth, as a child, a teenager, a young adult or in our later years. They may not be recognized as Periodic Paralysis in the beginning. Many things can factor into that, including the form of PP we may have and the triggers for the symptoms..

Why does Periodic Paralysis happen? Individuals are born with Periodic Paralysis. This happens because they have a faulty gene or genetic mutation in their DNA inherited from one or both of their parents. The most common mutations are SCN4A, KCNJ18, CACNA1S, KCNJ2, KCNJ5, CACNA1C and KCNE3. About 50% of the mutations for Periodic Paralysis have not been discovered yet.

What is the cure? The bad news is there is no cure for Periodic Paralysis at this time. However, the good news is for most people with PP the symptoms can be decreased, minimized, reduced and managed well in all-natural ways.

How do I treat it? Periodic Paralysis is treated by determining the triggers or causes of our symptoms and by then eliminating, modifying, avoiding or stopping them. We must keep our body in total balance and we must change the way we eat and what we eat.

Will it get worse? The sooner one can begin to treat his or her symptoms correctly, the better chance he or she will have of avoiding getting worse. Many of us, however, will develop gradual permanent muscle weakness (PMW) regardless.

Will I die from this? Periodic Paralysis can be fatal and has been for many people, including some members of my family. My own great uncle died at 41 during an episode. It is important that the symptoms are treated and managed appropriately. The following blog article has more information. https://livingwithperiodicparalysis.blogspot.com/2017/12/periodic-paralysis-is-life-threatening.html.

Is it contagious? Not at all, PP is not a communicable disease. It is inherited from one or both parents.

Will my children get it? Anyone who has a form of Periodic Paralysis or is a carrier of the genetic mutation has a 50% chance of passing it on to his or her child.

How do I manage this? The symptoms and paralytic episodes of Periodic Paralysis can be managed in all-natural and drug-free ways. We have created a plan that can be adapted for anyone and every form of PP. The article below has very helpful information. https://livingwithperiodicparalysis.blogspot.com/2017/10/how-to-manage-our-periodic-paralysis.html https://periodicparalysisnetworkinc.com/ppni-asea/

Why can’t I move my arms during an attack? Our symptoms are directly related to the form or forms of Periodic Paralysis for which we have a genetic mutation, the trigger or triggers causing the symptoms and co-morbid or co-existing conditions we have with the Periodic Paralysis. When a trigger (drug, stress, exertion, and much more) is introduced to or in our body, it sets into motion symptoms of many forms including paralysis to part or all of our body. For Hypokalemic Periodic Paralysis (low potassium) it results from potassium moving from the blood into muscle cells in an abnormal way due to the calcium channel not signaling for appropriate release of calcium. For Hyperkalemic Periodic Paralysis (high potassium) it results from sodium flowing into the cells because the channel remains open inappropriately. For Andersen-Tawil Syndrome (shifts of low and high potassium) it results when the channel does not open properly; potassium cannot leave the cell. This disrupts the flow of potassium ions in skeletal and cardiac muscle

Should I take potassium? Many individuals with Periodic Paralysis take potassium, but many do not nor should they. It is best to remember that not all people with PP actually need to take potassium supplements. Many of us shift only in normal ranges and other have Hyperkalemic Periodic Paralysis so if we take potassium it causes us to go into paralysis. Still others of us shift high and low, so we should not take it unless we know we are low and know it for sure and monitor it closely. Potassium is a very individual issue for each of us. Seeing a doctor is the best option if you are considering taking potassium.

My doctor says I have conversion disorder? My doctor says I have conversion disorder or functional neurological disorder (FND)? If a doctor diagnoses someone who has symptoms of Periodic Paralysis with conversion disorder, somatization, functional disorder (FND), lying, faking it and more, that individual needs to find a new doctor as soon as possible. It is essential to find a doctor who will believe the patient, be willing to learn with and for him and be willing to work with and for him. The following blog article will be helpful to read. https://livingwithperiodicparalysis.blogspot.com/2013/12/conversion-disorder-vs-periodic.html

Why am I always tired? Individuals with Periodic Paralysis, a mineral metabolic disorder, tend to have bodies or systems that are not in total balance and therefore not working properly. This can cause a myriad of symptoms including muscle weakness, fatigue and exercise intolerance. We have created a plan to assist in bringing balance back to our body. Once back in balance, the fatigue may ease. Sometimes, over time, however, some of us develop Progressive Permanent Muscle Weakness (PMW). In this case the muscle weakness that may feel like being tired is not reversible. The article below may help with understanding the balance that is important to us. https://livingwithperiodicparalysis.blogspot.com/2017/10/how-to-manage-our-periodic-paralysis.html

Is this related to sleep paralysis? No, they are two separate conditions. Only Periodic Paralysis is a mineral metabolic disorder caused by a genetic mutation. It does not go away and the episodes can happen at any time, regardless of sleep. The episodes of paralysis do not go away or stop instantly. They can last for many hours.In sleep paralysis the person is caught between being awake and being asleep. The symptoms end as soon as the person is fully awake, usually after a few short minutes.

Is there any hope for a cure? Not much money is put into research for such a rare disease, but there is always research occurring that is working for a cure or proper treatment. We can have hope that a cure may be found some day soon.

My child’s teachers say he is faking paralysis? Sharing medical records and a diagnosis from your doctor would be a great place to start. They cannot argue with a diagnosis. We have written a book, What is Periodic Paralysis. It was written and designed to teach others the basics of Periodic Paralysis and to bring awareness to this rare medical condition. We suggest sharing a copy with the people in your life, such as family members, doctors, teachers, co-workers, baby sitters and more. PPNI Publications on Amazon We also have a Periodic Paralysis Network Blog with more that 175 articles related to all aspects of Periodic Paralysis. It is free and open to the public. You may share the link below with them or links to specific articles with them. https://livingwithperiodicparalysis.blogspot.com/.

How do I educate my family about this? We have written a book, What is Periodic Paralysis. It was written and designed to teach others the basics of Periodic Paralysis and to bring awareness to this rare medical condition. We suggest sharing a copy with the people in your life, such as family members, doctors, teachers, co-workers, baby sitters and more.PPNI Publications on AmazonWe also have a Periodic Paralysis Network Blog with more that 175 articles related to all aspects of Periodic Paralysis. It is free and open to the public. You may share the link below with them. https://livingwithperiodicparalysis.blogspot.com/. We also welcome family members to our Periodic Paralysis Support, Education and Advocacy Group. https://www.facebook.com/groups/periodicparalysisnetworksupportgroup.

No one believes me? Please feel free to join our Periodic Paralysis Network Support, Education and Advocacy Group. You will find many others with the same problem. We support each other and share information and ideas. You may also want to share some of our materials with the doubters. https://www.facebook.com/groups/periodicparalysisnetworksupportgroup. We have written a book, What is Periodic Paralysis. It was written and designed to teach others the basics of Periodic Paralysis and to bring awareness to this rare medical condition. We suggest sharing a copy with the people in your life, such as family members, doctors, teachers, co-workers, baby sitters and more. PPNI Publications on Amazon. We also have a Periodic Paralysis Network Blog with more that 175 articles related to all aspects of Periodic Paralysis. It is free and open to the public. You may share the link below with them or links to specific articles with them. https://livingwithperiodicparalysis.blogspot.com/. Diagnosis is a huge problem for people with PP. Diagnosis is a huge problem for people with PP. You were misdiagnosed with many things, including MS for ten (!) years, as I read.

What do you think were one or two key things that you or someone else did that helped you get the correct diagnosis of Andersen-Tawil, finally? There were three main factors that helped me to finally get my diagnosis of Andersen-Tawil Syndrome. The first was to create a family chart, which included pictures and medical information from several generations of my family members, alive and dead. I did this by sending out a medical questionnaire and spoke with my family members. I was amazed when I received them back with all the medical issues that fit the characteristics of ATS and that everyone thought was ‘normal’ and that each had been suffering in silence. I also created a file with all of my medical records and tests results and photos of my own characteristics. I made charts to monitor my symptoms and vitals. I included as much information about Andersen-Tawil Syndrome as I could find.Second, I searched until I found a doctor willing to listen, to search through my information and to work with me. Third, I ‘hit him between the eyes with the facts.’http://livingwithperiodicparalysis.blogspot.com/2014/02/my-story-how-i-got-my-diagnosis-of.html , http://livingwithperiodicparalysis.blogspot.com/2015/03/how-to-get-periodic-paralysis-diagnosis.html