Periodic Paralysis Network Diagnosis Project Part Two

Hello All,

Last year, not long after our book was published, we had two of our members within a few weeks of each other; see a Periodic Paralysis specialist in New York. One of them was clinically diagnosed and another seeking a diagnosis for their child. The one who was seeking a diagnosis for their child was immediately dismissed and treated very poorly after an EMG that did not show any problems (not necessary for a diagnosis and the test is not conclusive nor is it always done correctly) and the one who had a clinical diagnosis was going to lose their insurance and wanted to get some help from the specialist before that happened because she was so ill and getting worse very quickly. She was actually told by a leading ATS specialist that she could not possibly have Periodic Paralysis due to the fact that her potassium levels were "TOO LOW”. They actually drop down to the 1.0s!!! Her original clinical diagnosis was overturned. Each of these families traveled across the country at great expense. The one individual who had her diagnosis overturned, actually received confirmation of a genetic mutation for a form of Periodic Paralysis several months later for herself and other family members!!!!

This was too much for me watching this happen to our members who are so ill and being treated so poorly by misinformed doctors in general and the "specialist" in particular. Instead of continuing to write my second book about Periodic Paralysis, I immediately shifted gears and set out to come up with a set of criteria or a better and easier way to diagnose all forms of Periodic Paralysis clinically…based on symptoms and characteristics, rather than genetics because only about fifty percent of individuals with Periodic Paralysis have genetic mutations which have been located or because the genetic testing is too narrow in its scope.

 
I wrote a plan and made four surveys to gather the information I needed to create a new and better set of guidelines for doctors to be able to diagnose all forms of Periodic Paralysis based on an individuals symptoms and characteristics. Each survey took much longer than I had hoped to get enough members to complete, but we finally got enough information so I began to work on the data and statistics and began to put it altogether. As luck would have it, however, I ended up pushing myself too hard to get this all done and ended up having two TIA's small strokes.  I had to put it all aside for a while as I recuperated. Unfortunately, I have never fully gotten better.

I have, however, begun to feel well enough to resume this project. The information we have gathered has had many surprises and I am anxious to get it completed. Many questions asked in our groups can and will be answered in this project.

We are hoping to present it to a set of fresh eyes...a set of doctors who know next to nothing about Periodic Paralysis and have no biases or preconceived ideas or who are using old and outdated information. It is our hope that these guidelines will be used as the new standard for easily recognizing and diagnosing Periodic Paralysis in a timelier manner.

Calvin and I are retired special education teachers and we both have degrees in psychology as well. We have three published books and are working on writing our next books, as well as this project. For the past several weeks, I have been in a slump and not been able to do much writing. I am finely beginning to feel a little better and I want to get this project done and present the results to our members and doctors.

Until Later…