Periodic Paralysis Network Diagnosis Project

Hello All,

I wanted to apologize for not writing or communicating in the past few weeks. I have actually not been very bad physically, but have hit what may be called "writer's block" with a little depression and some PP fog. This has developed after I have spent the better part of the last 3 1/2 years writing all day, every day as I was able. The break has been good for me and I am about ready to get back into my regular routine and complete several projects including a new book and our big project: “Creating Guidelines/Criteria For Diagnosing Various Forms of Periodic Paralysis Clinically”

Over the past year we have presented a series of four surveys attempting to gain information in order to develop a new set of criteria, which doctors can use to better diagnose individuals with Periodic Paralysis, clinically (based on symptoms...not genetically). The surveys gave us a great deal of information and many surprises and has been overwhelming to sift through. It has taken much longer than first thought to process and the surprises have taken us in a few new directions. The following is an outline of the project.

                                                                               PPN Project:
                                                                  Creating Guidelines/Criteria

For

Diagnosing Various Forms of Periodic Paralysis Clinically

(Without using Genetic Testing)

About 40 % of all individuals suffering from the devastating affects of various forms of Periodic Paralysis do not have a known genetic mutation. By the time some one discovers this, many, many years have passed after many misdiagnoses and wrong medications, etc. Most doctors will not diagnose someone without a known genetic code. Other doctors will not diagnose based on a lack of knowledge or by using outdated information.

Without a diagnosis individuals cannot get the medications they need or may be given medications, which may harm or kill them. They may not be able to get disability or have to continue to work, which may make them worse. Some may attempt to prove they have PP by provoking symptoms, which can kill them. This does not happen in other diseases. Other diseases are diagnosed based on their symptoms. This is called a “clinical” diagnosis.

We are attempting to create a set of symptoms and characteristics called criteria, to be used by doctors to make a clinical diagnosis, once everything else has been ruled out. This final report or study will be presented to a team of doctors, who are not related to the PP “specialists”, but a set of fresh eyes, to look at the results. This report may be published and will hopefully be used as a guideline for any doctor to diagnose all forms of PP based strictly on their symptoms.

Many members of our group/board at the Periodic Paralysis Network, who are not diagnosed genetically, display many of the same symptoms and characteristics of Andersen-Tawil Syndrome (ATS) but have many more symptoms which are the same but out of the ordinary for ATS and seems to have an autoimmune component. We believe there may be a type of ATS without a known genetic code, which we are calling Periodic Paralysis+10 Syndrome. We are hoping the data collected may shed some light on this possibly new form. We hope to be able to have this new form be recognized and be diagnosed based on the symptoms we will outline.

Thank you all for your support.

Until later…