Beware Of "Off-Label" Drugs

Hello All,

 
I posted this on our PPN Support, Education and Advocacy Group today. I wanted to share this information once again with those who have PP or anyone who has a family member with PP. It is an important message, which I have written about several times before.

We are a patient advocacy group as well as a support group and educational group. It is our duty to provide information to keep each of you informed, safe and to be the "best you can be." For that reason I am passing along this information once again.

It has come to our attention that someone we know with PP, who is not genetically diagnosed, was placed on the known medications typically prescribed for PP sometime back. This person has had no end of serious issues and complications connected to this. So, I wanted to pass this information along once again.

Some people do well on those medications and we are not telling anyone to stop taking them if that is the case. However, others do not do well and/or they may develop side effects from these drugs which can be harmful and can become life-threatening. If that is the case, there is more information here for you to consider. If you have been given a prescription for one of them, you may want to read the information here before you start it, so you will know what to expect or what to look for, in order to be safe.

Periodic Paralysis is a mineral metabolic disorder (ion channelopathy). There are NO drugs recommended/approved by the FDA for Periodic Paralysis. The ones typically used, that we know about are strictly "off-label" (made and used for other conditions).

From: https://www.rarediseasesnetwork.org/cinch/learnmore/faqs.htm

"Q: Are there drug treatments for periodic paralysis or the myotonias (PMC)?"

"There are no FDA approved treatments for periodic paralysis or the myotonias. Any medications currently prescribed for these disorders are used "off-label". "Off-label" means the drug is approved to treat another condition/disease, but was not scrutinized under the quality control protection of the FDA's clinical trials process for treatment of myotonias or periodic paralysis".....

This is the complete blog:

http://livingwithperiodicparalysis.blogspot.com/2014/06/beware-of-off-label-drugs.htmlhttp://rarediseasesnetwork.epi.usf.edu/.../learn.../faqs.htm :

"Q: Are there drug treatments for periodic paralysis or the myotonias (PMC)?"

"There are no FDA approved treatments for periodic paralysis or the myotonias. Any medications currently prescribed for these disorders are used "off-label". "Off-label" means the drug is approved to treat another condition/disease, but was not scrutinized under the quality control protection of the FDA's clinical trials process for treatment of myotonias or periodic paralysis....."

While researching this I found out some interesting information about some forms of Hypokalemic Periodic Paralysis and the use of those drugs. Some forms do not respond to them and some cause paralysis and/or worse symptoms:

 A study from 2001 relates two different types in particular but I am sure more have been discovered by now: CACNL1A3=Hypokalemic Periodic Paralysis-1 and SCN4A=Hypokalemic Periodic Paralysis-2, each with several mutations...and of course there are the ones that have not been found yet.

When someone is diagnosed with Hypokalemic Periodic Paralysis, clinically, (based on their symptoms), one must be very careful. One form either does not respond to diamox (acetazolamide), causes more paralysis or causes serious symptoms. So, diamox should not automatically be given to people clinically diagnosed with Hypokalemic Periodic Paralysis or if it is, it should be used with extreme caution.

From the article:

 “In conclusion the present study demonstrates that genetic characterization of HypoPP patients is important to decipher the clinical and histopathological features of the disease, and to predict the response to therapy. We suggest that mutations in the SCN4A gene should be systematically sought in HypoPP patients suffering from paralytic attacks followed by myalgias or worsened by acetazolamide, and when muscle biopsies reveal the presence of tubular aggregates.”

 http://brain.oxfordjournals.org/content/124/6/1091.full.pdf

About half of us do not have a genetic diagnosis and do do know what form of PP we actually have. If we are going to take these medications, we must be very careful and closely monitor our symptoms and the side effects.

For more information about this subject you may want to read in our files:

"Why we discourage discussion of diamox and acetazolamide.dot · version 1"

"Cautionary Information about Acetazolamide and Diamox for Individuals With PP.dot · version 1"

"Information on diamox.dot · version 1"

Or on the blog:

http://livingwithperiodicparalysis.blogspot.com/2014/02/some-forms-of-pp-worsened-by-diamox.html

http://livingwithperiodicparalysis.blogspot.com/2013/12/periodic-paralysis-and-metabolic.html

Again, we are not trying to tell anyone to stop taking any medications. If they are working and there are no side effects, then there are no problems. If, however, these meds may be causing side effects or if you are trying to decide whether to take them or not, hopefully this information can help you to make an informed decision.

Hugs to you all...

"This Book Lead To My Genetic Diagnosis Of Anderson-Tawil Syndrome II": Book Review by Guest Blogger Tammy

Hello All,

Calvin and I wrote and published the book living with Periodic Paralysis: The Mystery Unraveled, last year. I have written much about, but recently a member of our Periodic Paralysis Network Support, Education and Advocacy Group, Tammy Collins-Levi, wrote a wonderful review on Amazon.com after purchasing it and reading it. She discussed how it changed her life. We have decided, with her permission, to share it with you today.

Thank you so much Tammy for writing this and allowing us to share it with everyone!!

This Book Lead To My Genetic Diagnosis Of Anderson-Tawil Syndrome II

If you or someone you love is fighting the uphill battle of getting a diagnosis, this book is for you. I had been sick for years. I became seriously ill 4 years ago. So many opinions with out any educated knowledge followed. I cannot begin to tell how much was lost during the past years of having a rare illness. But Susan speaks my story perfectly. I had already been to Orlando to meet with many others that suffer from Periodic Paralysis and had my genetic DNA sent to Germany. It seemed like all the doctors kept putting me off with waiting on my results from Germany. As some of you might know this can take years and with my heart problems it could of cost me my life. I am 38, happily married, and a mom of four. This rare condition almost took my life many times. I was left drained and with brain fog that was hard to see through. I was searching for answers and others who had been told this is not real!

I bought Susan and Calvin’s book and was shocked that other people have suffered so badly. I was overjoyed to find someone that had taken time to tell the story with hopes of helping others heal! I realized it was time I pull it together and go through my records. I pulled all the facts. That is what matters to any other doctor and makes them stop in their tracks. I pulled all the labs, test, EKGs, EMGs, and left the doctors opinions in the dust where they belong!! “Hit them with the facts” Susan you hit that one right on the head. I had heard this from others, but with no true advice about how to do this. You guys walked me through it step by step. The organized thought process to getting through all the red tape and nailing down what is being missed is the best I have come across. And I am a fighter for what was lost. I have done countless hours of research and spent a ton of money traveling around the country to figure out what stole my health. This book is the best I have found to address it all.

I meet with my geneticist on June 15^th and she took all my organized medical facts and gave me a 100% clinical diagnosis of ATS. She informed me my labs showed electrical heart dysfunction and I am scheduled to have a pacemaker and defibrillator in a few weeks. If I had given up she said I would of probably passed from sudden arrhythmic death syndrome. How sad that would of been for my big family that has fought right beside me to find answers.

To sum it up this book helped organize my foggy mind, lifted my spirits, and give me the drive to fight like Susan did to get a real diagnosis before it was too late. This book saved my life and opened up new doors to my future. My life is different, but at least I know what I am fighting now. That was a priceless gift that this book gave my family and I.

Read this book and follow the advice offered and it will lead you in the right direction. Because you have all been on a never ending roller coaster ride and it is time to get off. It is time to walk up to your fears and say it’s time to get this right this time. No more games. Your life is important! Remember it is your body that is failing and only you know how that feels. Don’t settle for a diagnosis that doesn’t fit or make sense.

Thanks Again Susan for standing up for us all!!!!!




Until later...

Changing Lives Naturally

Hello All,

It has been awhile since I have posted a new blog. Actually, it is because I have been doing so well and have been able to do so much more than I have in several years, that I have been catching up on lost time doing things I never thought I would do again.

I had been on a medication (mirapex) which I thought I could never get off of. I tried many times and my symptoms got worse each time I tried over the years and I thought it was really helping my restless leg syndrome. For my 2014 New Year's resolution, I decided I really needed to try to get off of it again. I really needed to know if it was causing the symptoms that continued to keep me weak, etc and unable to function. I tapered off of it for months and just lived with the awful effects of withdrawal. Once I stopped it completely, I still had some issues, but over time and with working on my diet and other little changes, I was suddenly better and had no more restless leg also!! The fog lifted, I no longer had the awful weakness and I have had no paralysis for three months!!!

I am ready to get back to work with my writing, but I still need to take it easy because I continue have exercise intolerance, blood pressure issues and heart arrhythmia issues. After all, I still do have Periodic Paralysis, but it is definitely under better control, all by natural means.

Today's blog is something I wrote awhile back on our Periodic Paralysis Support, Education and Advocacy Group. It is time again to post it on our board and on our blog. We make no apologies for our philosophy, which has changed and saved many lives. It is posted on our logo: "Changing Lives naturally":

Hello All,

Since we have had so many new members join in the past few weeks, we wanted to post this information again. Our group is a little different and unique compared to the other groups. Not everyone is aware of this when they join. We are a support group and an educational group and also an "advocacy" group. We are concerned with your safety and how you are being treated, by the medical professionals in your life.

Please read the following.....for your information.

"Since we have so many new members I wanted to review with everyone about what the Periodic Paralysis Network is all about. We have a forum with several different options for information and support. We have four discussion groups (support, genealogy/genetic, book discussion and medical professional) which are all private for obvious reasons. We have two pages....mostly for just reaching others who need to find our help and education. We have our original website with a great deal of information. And we have a blog which is open in order to reach everyone around the world (has a translator), including medical professionals. We also have written a book, "Living With Periodic Paralysis: The Mystery Unraveled." It has 444 pages of information, is fully indexed and and we use over 250 references. It took us three years to write.

This group is our support, education and advocacy group. We welcome everyone and anyone who has any form of Periodic Paralysis or who suspects they have it (also family members). We provide support to those who are diagnosed or attempting to get a diagnosis.

We are an educational group because we provide information based on research. We attempt to answer any and all questions with information we find/found through research. Many of the answers are also in our book and on our website and our blog. Some things are also found in the "Files" section of this page.

We are an advocacy group. We work toward the improvement of quality and safety in healthcare for everyone with Periodic Paralysis. We are a member of the Patient Advocate Directory!!! They are a world-wide network of individuals and independent organizations working toward the improvement of quality and safety in healthcare.

We are here to help you "be the best you can be". Many of us cannot tolerate the pharmaceuticals/drugs/medications which are typically prescribed and through research and experimentation, we have found natural ways to manage and ease the symptoms of Periodic Paralysis. We share them with you.

As advocates for you, we also pass along the information about the pharmaceuticals/drugs/medications which are typically prescribed for every form of Periodic Paralysis. We caution anyone on them or who is considering using them to be aware of the side effects and possible problems from them. We also caution everyone who has Periodic Paralysis to be very careful if you are taking any pharmaceuticals/drugs/medications, anesthetics for surgery and IVs.

Periodic Paralysis is a mineral metabolic disorder and must be treated as such.

Our focus is on educational resources and self-reliance. Our approach to treatment focuses on the self-monitoring of vitals and the management of symptoms through natural methods such as the elimination of triggers and awareness of proper nutrition and supplementation. This approach evolved from the inability of the medical community to provide appropriate medical diagnosis and treatment. We continue to do research and provide the latest information to our members."

Thanks,
Susan and Calvin

 Until later...

Paramyotonia Congenita: Another Form Of Periodic Paralysis

Paramyotonia Congenita: Another Form Of Periodic Paralysis

Paramyotonia Congenita is a form of Periodic Paralysis (PP). I have overlooked this form in my writings and in my book. I now want to describe and explain it, as it is an important form and can accompany all other forms of Periodic Paralysis; Hyperkalemic Periodic Paralysis, Hypokalemic Periodic Paralysis and Normokalemic Periodic Paralysis, but usually is seen with Hyperkalemic Periodic Paralysis. It may also occur or manifest as Hyperkalemic Periodic Paralysis and is believed to actually be a form of Hyperkalemic Periodic Paralysis.

Paramyotonia Congenita (PMC), also known as Eulenburg Disease, is a rare, hereditary mineral metabolic disorder, which is also called a channelopathy and it affects the muscles used in move-ment. Caused by certain triggers, the sodium channels close much too slowly and the sodium, potassium, chloride and water continue to flow into the muscles. The skeletal muscles can become stiff, tight, tense or contracted and weak. PMC is caused by mutations in the SCN4A gene, a voltage-gated sodium channel. There is a 100% penetrance. This means if one has one of the mutations for it, they have a 100% chance of having it. In the same family, some members may have mild forms and others may have more extreme cases. It is actually considered to be a form of Hyperkalemic Periodic Paralysis, however, the symptoms can appear from shifting of potassium into low or high ranges or even if potassium shifts within normal levels.  Symptoms can begin shortly after birth or during childhood or at any time in early adulthood.

Myotonia is the prolonged or lengthy contraction, tensing or lack of relaxation of a muscle or group of skeletal muscles, which is relieved by exercise. For those with Paramyotonia Congenita, the contractions or tightness are not relieved by exercise. The symptoms or muscle tightness are brought on by triggers such as exercise or exertion, repeated movement and cold. It is also known that episodes are common in the early morning so sleeping in, in the morning, may cause episodes.  Hands, face and eyelids are often seen affected. It can be seen as simply a hand cramp while writing or the inability to let go of something being held in the hand like a doorknob or the effects can be as significant as total body paralysis with contracted and tight muscles. The episodes can last for minutes, hours or days. There may also be intermittent flaccid paralysis as in the other types of Periodic Paralysis in which there is no muscle tone and the muscles are totally loose and slack. Because breathing muscles may be affected, shortness of breath may accompany episodes. Episodes may be mild or very severe and pain may be experienced even after the episode has ended. Individuals with PMC may appear to be stiff or look tense, even when not in an episode.

There is some difference of opinion as to whether PMC is a progressive condition, but more recent analysis and study of patients with PMC, indicates that some individuals may have some progressive and permanent muscle weakness.

Avoiding known triggers is the best treatment. Some individuals respond well to the common medications used for Periodic Paralysis, but the side effects can be worse than the symptoms. Because extremes of any type can cause episodes, moderation of everything and anything is important. A pH balanced diet can also be helpful because a high pH can cause symptoms and episodes to be eliminated or shortened. Also, due to the fact that episodes may be precipitated by low or high potassium, or even shifting within normal ranges, the levels of potassium must be evaluated individually for each person.

Individuals with  Paramyotonia Congenita/Hyperkalemic Periodic Paralysis are at great risk for Malignant Hyperthermia, severe reactions to general anesthesia. Extreme care must be used if surgery is needed.
 
“General anaesthesia may trigger episodes of paralysis lasting for hours, in individuals with hyperkalemic periodic paralysis or paramyotonia congenita. For this reason, depolarizing muscle relaxants and acetylcholinesterase inhibitors are particularly unsuitable. To avoid complications the anesthetist must be informed about the disorder in advance of surgery.”
 
http://www.socialstyrelsen.se/rarediseases/hyperkalemicperiodicparalysisa#anchor_1
http://rarediseasesnetwork.epi.usf.edu/cinch/learnmore/faqs.htm

http://www.mhaus.org/

http://www.mhaus.org/healthcare-professionals/be-prepared/associated-conditions

http://ptjournal.apta.org/content/81/3/945.full

 

 Until later…

References and more information:
http://en.wikipedia.org/wiki/Paramyotonia_congenita
http://mda.org/.../inherited-and.../paramyotonia-congenita
http://ghr.nlm.nih.gov/condition/paramyotonia-congenita
http://www.rarediseases.org/.../rar.../byID/907/viewAbstract

http://www.socialstyrelsen.se/rarediseases/hyperkalemicperiodicparalysisa#anchor_1

http://rarediseasesnetwork.epi.usf.edu/cinch/learnmore/faqs.htm

http://tulane.edu/som/departments/neurology/programs/clerkship/upload/wch17.pdf

http://medind.nic.in/iad/t05/i3/iadt05i3p217.pdf

http://en.wikipedia.org/wiki/Paramyotonia_congenita

http://en.wikipedia.org/wiki/Myotonia

http://www.merriam-webster.com/dictionary/myotonia

New Discoveries

Hello All,

After many months of being very sick with extreme weakness, brain fog and more paralytic attacks with  "ups" becoming shorter and my "downs" getting longer, I am finally doing much better. I have found a good balance that is working for me for the present time and I hope it continues.

I have attempted to put all of the little energy I have had into continuing to read and research regardless of how bad I am feeling and it has been very difficult. I did not want to give up. I have made a few important discoveries and continue to try to put it together. One of the important things I have wanted to share is that I finally had a breakthrough with my own genetic research, and my information will hopefully help all of you understand things that up until now, we have not been able to do.

I have been trying to understand how to decipher all of the information I have in my own DNA test results. I finally figured it out after a few months, and now I am painstakingly able to sift through the information and numbers and understand them somewhat.

I now know that positively I have Paramyotonia Congenita (PMC) a form of Periodic Paralysis. I have three mutations that are known to cause it.

Exon 5i c.703+55C>T - p.(=) SCN4A_00004
Exon 6 c.864C>T - p.(Asn288Asn) SCN4A_00009
Exon 8 c.1167T>C Tyr389Tyr r.(?) p.(=) SCN4A_00012

I also discovered that one of those mutations above is responsible for what is called "enhanced slow inactivation" . This is related to how long the episode of paralysis/weakness may last. If one has "enhanced slow inactivation," it causes the episodes to last longer. My research also led me to the knowledge that a lower pH will help shorten the length of weakness or prevent it.

PMC has now believed to be a form of Periodic Paralysis and is found to accompany Hypo PP, HyperPP and Normo PP, but usually hyperPP and normo PP.

Of interest in the PMC diagnosis is that people from Ravensburg, Germany have the highest concentration of it. My genealogy indicates I have one genealogy shows that one of my family lines is from Ravensburg, Germany!

I too have five mutations at KCNJ5. A new form of ATS has been discovered at that mutation. This is also called Long QT 13. I have 24 mutations at CACNA1C, which is related to mutations for Normokalemic Periodic Paralysis.

I discovered that for sure I have the mutation for Long QT 1:
KCNQ1:c.1638G>A (p.Ser546=) AND AllHighlyPenetrant

"AllHighlyPenetrant…Term used to represent disorders for which a pathogenic allele would be expected to be expressed as the disorder." This means if you have this mutation...you more than likely have the condition.

So it would seem I have PMC and Long QT 1 and the possibility of either HyperPP and/or Normo PP and/or ATS.

No wonder I have been so ill for so many years!!

If you want to find your genetic mutations I believe it is best to have “whole genome” testing done. It is unbiased and everything is revealed.

Until later…….

200 Members!!

Congratulations to us all at the PPN Support and Education Group!!! We now have over 200 members!!!!!!!!

https://www.facebook.com/groups/periodicparalysisnetworksupportgroup/

Thank you all for your support!!!

A Reply to a ‘Conversion Disorder’ Diagnosis by Guest Blogger Maureen

Hello All,

Maureen, one of our PPN Support Group members, has written another great article. This one is about 'conversion disorder' a term used very loosely and given to many of us by doctors who know nothing about Periodic Paralysis.

“I'm considering asking the next doctor who even hints or insinuates anything about 'conversion disorder' (or anything similar to this so-called diagnosis) how they are able to retain thoroughly knowing the over 7,000 KNOWN rare diseases, let alone the KNOWN mutations of just ionic channelopathy disorder mutations and all the complex potential mixes of these that are not even comprehended by the most advanced researchers who focus on trying to learn about these as their life work, and congratulate them on their understanding of not only knowing all of these and understanding them, but also inferring that they know and understand about the recently discovered 2nd language of the DNA that is a long way from being thoroughly and correctly deciphered by experts in this field that will affect medical knowledge and diagnosis...so that they think themselves to be expert enough to discard all the information that is known and published about these (which we know isn't complete because the more that is learned, the more is realized how much ISN’T known) so that they can rule ALL these and more out and confidently think they are competently and accurately diagnosing a conversion disorder at the risk of harm coming to their patient who will not receive appropriate and possibly life saving and for sure life-altering treatment if they 'diagnose’ and 'label' the person as having a conversion disorder.”

Maureen....I wish you could hear my hands clapping in applause as I squeal in delight!! Well said as always!!!! Thanks so much!!!!

The Challenges of Periodic Paralysis by Guest Writer

Hello All,

Today I am posting something written by one of our members. I have been having a very difficult time with paralysis, weakness, “brain fog” and more the past week. I posted this information on our PPN Support Group board a few days ago. I also apologized for not responding to everyone’s posts like I usually do. Maureen wrote the following in response and I wanted to share it with everyone. It is important for others to know what it is like to live with Periodic Paralysis.

“With much admiration and appreciation for your perseverance and dedication…You have no need to apologize for anything. Wish that your conditions weren't robbing you of vitality. It is hard enough to deal with physical incapacitation and pain drain, let alone depletion from difficulty breathing and effort to sustain let alone push through despite how you are feeling. To have brain fog adds so much more depletion and challenge. It does get harder to get replenished. Because of our physical compromise that results in slowness, lack of movement, and even immobilization, we wouldn't think about correlating the effects of our condition to compare to that of an athlete. And to people who don't have conditions like PP (let alone having any additional disorders), it probably seems ludicrous to use an athlete as an allegory to being a person with PP.

But the extra exertion on our body to have to work in the condition of how we're compromised and with so many obstacles in order to just be managing to sustain basic function seems comparable to the effort that athletes exert to accomplish their goals. But the efforts they need to exert, to achieve their goals are self-imposed and voluntary choices. We aren't given the choice when our DNA dictates what our bodies are going to have to deal with in order to function to accomplish the goal of living let alone strive to accomplish projects and tasks that give meaning and purpose and fulfillment.

Living with a condition like PP requires more effort and endurance than someone would have to do who does not have this kind of physical compromise. Living with PP is like being an athlete, such as a marathon runner or a swimmer, because more exertion is required for an athlete to reach a higher level of performance and with PP our bodies have to perform at a higher level of exertion in order to perform in the 'race of life'. But unlike being in a marathon, there aren’t scheduled breaks to anticipate and provide opportunity to be refueled. No one would expect a car to keep going without fuel or with electrical failure or mechanical failure. And no one would expect a runner to run with mud closing in around their feet up their legs or run barefooted through obstacles like glass or sharp pebbles or unstable ground with rocks and holes that would hinder their performance or could even be dangerous or a swimmer to swim in mud, clay or quick sand.

With PP that is what our bodies are dealing with in terms of having extra obstacles and challenges to function. But unlike an athlete who can build up endurance through pushing themselves physically, we get more depleted when we push ourselves. We can't build up endurance when we put in more effort and we won't experience the reward of expanding greater physical capacity, greater well-being and health benefits that an athlete gets the benefits of through their exertion. So it seems like PP is more challenging, physically, than the challenges of being an athlete, with what appears to be less reward and benefits. So, maybe it is ludicrous to correlate having the challenges of PP with the challenges of being an athlete.”

Maureen,

Thank you so much for sharing with us. What a creative way to explain the challenges of living with Periodic Paralysis!!

Hugs, Susan

Plagiarism

Hello All,

Today my blog is about “plagiarism.”  According to the Merriam-Webster Dictionary “plagiarism” is: “to use the words or ideas of another person as if they were your own words or ideas.” To “plagiarize” is: “to steal and pass off (the ideas or words of another) as one's own:  use (another's production) without crediting the source.”  In this paragraph I have added two quotes (words in quotation marks) from a website so I gave credit by saying, “According to the Merriam-Webster Dictionary” and I am adding the link to the website I found it at for even more credit and for anyone who is interested to see for themselves.¹
(http://www.merriam-webster.com/dictionary/plagiarize)

Sir Eriata Oribabhor writes in Facebook, Writing and Plagiarism,  “For the benefit of my friends who may not know what plagiarism is all about, let me advice that it is the use of another person’s work without crediting him/her.” He further states, “Therefore, to plagiarize the work of another and make it look like yours is bad and punishable. Plagiarism is a serious offense in literary and academic circle (Facebook inclusive).” This means that it is illegal and a person who plagiarizes can be punished and that it is illegal on Facebook.²

(http://authorpedia.wordpress.com/2013/11/12/facebook-writing-and-plagiarism-by-sir-eriata-oribabhor/)

In the above paragraphs I have appropriately and legally used someone else’s words and ideas by using quotation marks around the copied words and then gave the credit for the words. I will also add citations at the end of the article. The little numbers at the end of the paragraphs correspond to a number at the end of this article. The source for the information is included there. These are the two appropriate and legal ways to use someone else’s words and give them credit for it.

You may ask, why I am writing about this issue on a blog about Periodic Paralysis? I discovered this morning that another Periodic Paralysis Support Board on Facebook is using my words from my book, my website and blog articles without my permission and without giving me credit for it. This person is obviously cutting and pasting my work and cutting and pasting my work and then adding a few comments in between that I would not agree with in any way. She is then passing the words off as her own.

I do not mind if you, as members of our organization or individuals with Periodic Paralysis copy my blog articles, or articles from our website for your own use or even to share with family and doctors, as long as you give me the credit as the source, which I know that most of you do. In fact, I want our information to be passed along. I want everyone to learn about and know what he or she can about Periodic Paralysis. But, I will not tolerate someone else who is the moderator of another support and supposed education Facebook Board/Group for individuals with Periodic Paralysis, who lacks my education, experience, skills, ideas, understanding, knowledge and years of research and study to cut and paste and use my words and my knowledge and my hard work as their own.

I worry, too about the “advice” and misinformation that may be being passed on by this person to others. Please be careful and always check the source of the information you are receiving. Also be careful because no one should be giving another person medical advice or advice about medications on these boards.

The following is our copyright information:

Copyright © 2011 Periodic Paralysis Network

All rights reserved. No part of the Periodic Paralysis Network including the website, blog, support groups or book may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, recording, or other electronic or mechanical methods, without the prior written permission of the publisher, except in the case of brief quotations embodied in critical reviews and certain other noncommercial uses permitted by copyright law, only if credit is given. For permission requests, write to the publisher sqknittle@yahoo.com

1. Merriam-Webster (2014). Plagiarize. Retrieved from: http://www.merriam-webster.com/dictionary/plagiarize (April 24, 2014).

2. Oribabhor, Eriata, Sir. (November, 2013). Facebook, Writing and Plagiarism. Retrieved from: http://authorpedia.wordpress.com/2013/11/12/facebook-writing-and-plagiarism-by-sir-eriata-oribabhor/ (April 24, 2014).

Until later…

Periodic Paralysis vs Cancer

Hello,

 

Yesterday, several members of our PPN Support Group had a discussion, which was unsettling and about a subject I think about quite often since it is something I live with and hear about daily from our members.

Several of our members are cancer survivors as well as are living with the cruel symptoms of Periodic Paralysis (PP). Having one or the other is bad enough but to endure both is incomprehensible. The interesting issue here is how they were or are treated by doctors, families and friends, depending on whether it is the Periodic Paralysis or cancer from which they are suffering or for which they are being treated or for which they are discussing.

One member, who has been treated for cancer and is part of a Facebook support group for breast cancer patients, discussed how although cancer is a horribly dreaded disease and many of the members are in advanced stages, there is much hope in the posts these women write. This is due to the support they receive from their doctors and medical professionals and the treatments they receive that at least help them and many times cure the cancer. These individuals also receive support and help from family, friends, neighbors and even strangers.

She pointed out that those of us with the various forms of Periodic Paralysis or Anderson-Tawil Syndrome deal with mostly unkind doctors and with no “universal” treatment. I will go a few steps further and say that the doctors we see are not only unkind, but they are uncaring, rude and egotistical with little knowledge of PP and they use outdated and improper information when dealing with us. There is no “universal” treatment for PP and very little research is being done to find treatments or cures for the different forms.

Patients with cancer are supported with caring doctors who tell them with tears in their eyes, “we won’t let you die” or “we will beat this” and actually give their patients a hug, squeeze their hand or pat their back. Those of us with PP have doctors who tell us we need to ”see a psychiatrist” and diagnose us with conversion disorder, throw their pencil across the room and swear when they are told that the medicine they gave us caused horrible pain in our leg muscles, or tell us not to come back after the only drug used to treat PP made your paralysis worse so you had to stop taking it.

When in an episode of total paralysis we have doctors who will pinch us, stick us with pins and more trying to get a reaction from us to prove we are faking. We are given IVs and medications, which can kill us, even after we tell them not to do it. Some of us have even been told we are “too old” to have Periodic Paralysis.  Most of us get doctors who cannot or will not help us.

How wonderful it is when one of us locates a doctor who really cares about our welfare, even if there is nothing much they can do to help our symptoms!

One woman wrote, ”If I had cancer my family would probably care and call me and visit and take turns helping me, but with PP I get ignored. Yes, wouldn't it be wonderful to be treated like that by doctors and family and the public.”

Periodic Paralysis has the potential of being every bit as life threatening as cancer. It is a very rare, debilitating mineral metabolic disorder called an ion channelopathy. It is often misdiagnosed and mistreated, thus causing more damage or possible death to the person with it. On a cellular level, triggered by things such as sleep, exercise, sugar, salt, most medications, stress, cold, heat, anesthesia, adrenaline, IVs and much more, potassium wrongly enters the muscles either temporarily weakening or paralyzing the individual. Episodes can be full body lasting hours or days. If it affects the breathing muscles it can become terminal. Dangerous heart arrhythmia, heart rate fluctuation, blood pressure fluctuation, choking, breathing difficulties, cardiac arrest and/or respiratory arrest can also accompany the episodes. Due to these complications, it is extremely important to avoid the episodes. Gradual, progressive and permanent muscular weakness can also affect the individual with this condition.

Most of us know that we are just the wrong medication, one stressful situation, too much physical exertion, a meal that contained gluten without our knowledge or taking a nap from going into arrhythmia, cardiac arrest or respiratory arrest and dying. Yet, many of our family members do not believe us, ignore us, refuse to help us, are rude to us, keep our grandchildren away and think we are faking.

After reading this post and replies yesterday, I was saddened to have a close family member of mine, post something on her Facebook page that was truly upsetting, unsettling and surprising, considering she has never posted anything about Periodic Paralysis like this. She discussed how she had been to a presentation or some type of fundraiser for supporting an organization for people with lymphoma. She said “these things can happen to anyone of us or our family members” and so she was going to support this organization and people with this disease.

Well, to her I would like to say:

Hello there, remember me? I am a very close family member!!! This has happened and is happening in your own family!! I have a very rare, incurable, untreatable, incapacitating, disabling and progressive disease called Periodic Paralysis from which I am dying. I need your support as well as the others in our family who also have PP. We need to not be ignored, dismissed or forgotten. We need you to help spread the word about Periodic Paralysis in our family and help to educate the others as well as your friends. We need you to share our book and tell the others about our website and blog. We need you to share the information with your doctors.

This is a perfect example of what the members on our support group were discussing yesterday. Cancer patients are accepted by doctors, family, friends, neighbors and even strangers as being worthy of and needing help, support, kindness, recognition, respect, love and much more. However, individuals with Periodic Paralysis are seen as fakers, and liars who are lazy, and apparently not worthy of help, support, kindness, recognition, respect, or love by their doctors, family, friends, neighbors and even strangers.

It is bad enough being severely ill with a very rare, incurable, untreatable, incapacitating, disabling and progressive disease each and every day and having to give up so much due to the illness, but the stress of abandonment and mistreatment of our doctors, family and friends is nearly unbearable.

We continue to have hope that these things will change for us and we have each other for support.

Until later…