Hello All,
I have decided to present the results of the set of surveys in articles on our blog. It may take three or four articles to complete the project. The following is the first, as I wrote it last year when it was first completed.
The Periodic Paralysis
Network, Inc (PPNI) Project:
Creating Guidelines/Criteria
Creating Guidelines/Criteria
For
Diagnosing
Various Forms of Periodic Paralysis Clinically
(Without
using Genetic Testing)
This project, Creating Guidelines/Criteria For Diagnosing
Various Forms of Periodic Paralysis Clinically (Without using Genetic Testing),
was created, designed and executed by the Periodic
Paralysis Network, Inc. This project was deemed necessary after reports for the past
nearly four years of the inability of many individuals throughout the world, with
severe and obvious symptoms of the various forms of Periodic Paralysis, to
obtain a diagnosis despite the fact that everything else had been ruled out.
Also, some medical professionals called “specialists” in the field of Periodic
Paralysis have been known to overturn diagnoses already received by patients
from other doctors. The excuses given by these medical professionals and
specialists for denying a diagnosis or removing a diagnosis indicate a severe
lack of up-to-date knowledge and true understanding of Periodic Paralysis.
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, wrong medications and
treatment and more. 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by using outdated information.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 they may 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 medical conditions or diseases. Other conditions and 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. Orginally, this final report or study was to 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. Due to the knowledge that it may not be published, we have decied to present it in this manner, on our blog as a series of articles. It is our hope that this report, in its entirety, will hopefully be used as a guideline for any doctor to diagnose all forms of Periodic Paralysis based strictly on the symptoms of the individuals.
Many members of
our on-line Support, Education and Advocacy Group at the Periodic Paralysis
Network, Inc who are not diagnosed genetically, display many of the same symptoms
and characteristics of Andersen-Tawil Syndrome (ATS) but have many more
symptoms, which they share but are out of the ordinary for ATS and seems to
have an autoimmune component. We believed at the beginning of this endeavor
there may be a type of ATS without a known genetic code, which we called
Periodic Paralysis+10 Syndrome. We hoped the data collected may shed some light
on this possibly new form. We, in fact, were surprised by what the results
actually uncovered. The new information took us in another direction and
revealed much more about Periodic Paralysis; how it progresses and how to
diagnose it in a very new manner.
The following is our original plan:
The Project Outline
The Goals and Objectives
Goal 1:
The
first goal of this project is to provide medical professionals with a means to
recognize and diagnose three forms of a medical condition known as Periodic
Paralysis to include: Hypokalemic Periodic Paralysis, Hyperkalemic Periodic
Paralysis and Normokalemic Periodic Paralysis, which
either have no identifiable genetic code, or without the use of genetic testing
through a set of criteria to be established with this study.
Objective 1:
Gather data from a group of
individuals exhibiting similar symptoms of periodic paralysis, other similar symptoms
experienced regularly yet unexplained, potassium levels and affects of
potassium, similar co-existing diseases and conditions, similar unique physical
characteristics, similar medical history, similar family history, similar
results of medical testing and with or without known genetic mutation
discovered. This group may include individuals with clinical diagnoses of
various forms Periodic Paralysis.
Data to gather:
Description of the paralytic episodes
Other symptoms experienced regularly yet unexplained
Potassium levels and effects of potassium
Diagnosed diseases/conditions co-existing with periodic paralysis
Unique physical characteristics
Unique characteristics regarding medications
Patient medical history
Family medical history
Medical tests completed and results
Clinical diagnosis (if applies)
Other symptoms experienced regularly yet unexplained
Potassium levels and effects of potassium
Diagnosed diseases/conditions co-existing with periodic paralysis
Unique physical characteristics
Unique characteristics regarding medications
Patient medical history
Family medical history
Medical tests completed and results
Clinical diagnosis (if applies)
Objective 2:
Organize data from a group
of individuals exhibiting similar symptoms of periodic paralysis, other similar
symptoms experienced regularly yet unexplained, potassium levels and effects of
potassium, similar co-existing diseases and conditions, similar unique physical
characteristics, similar unique characteristics regarding medications, similar
medical history, similar family history, similar results of medical testing and
with or without known genetic mutation discovered. This group may include
individuals with clinical diagnoses of various forms Periodic Paralysis.
Locate:
Matching symptoms
accompanying paralytic episodes
Matching symptoms
experienced regularly yet unexplained
Matching diagnosed
diseases/conditions co-existing
Matching unique physical
characteristics
Matching unique
characteristics regarding medications
Matching patient medical
history
Matching family medical history
Matching medical tests completed and results
Matching clinical diagnosis (if applies)
Objective 3:
Create a set of criteria
for making a clinical diagnosis for three
forms of a medical condition known as Periodic Paralysis to include: Hypokalemic
Periodic Paralysis, Hyperkalemic Periodic Paralysis and Normokalemic Periodic
Paralysis, which, either have no identifiable genetic code, or
without the use of genetic, based on matching symptoms accompanying paralytic episodes,
matching symptoms experienced regularly yet unexplained, potassium levels and
effects of potassium, matching diagnosed diseases/conditions co-existing,
matching unique physical/other characteristics, matching unique characteristics
regarding medications, matching patient medical history, matching family
medical history, matching medical tests completed and results and matching
clinical diagnosis (if applies).
Set of criteria:
Symptoms of paralytic attack:
Symptoms experienced regularly yet unexplained:
Potassium levels and affects of potassium:
Diagnosed
diseases/conditions co-existing:
Unique physical/other characteristics:
Unique characteristics regarding medications:
Medical history:
Family history:
Medical tests results:
All else ruled out:
Clinical diagnosis of
Hypokalemic Periodic Paralysis
Clinical diagnosis of
Hyperkalemic Periodic Paralysis
Clinical diagnosis of
Normokalemic Periodic Paralysis
Objective
4:
Provide the results of this
study to a team of medical professionals who specialize in diagnosing difficult
to diagnose conditions, unrelated to any specialists of Periodic Paralysis or
Andersen-Tawil Syndrome, with the
intention of the
acceptance of the criteria as
standard for diagnosing Hypokalemic Periodic Paralysis, Hyperkalemic Periodic
Paralysis and Normokalemic Periodic Paralysis which
have no identifiable genetic code, or without the use of genetic testing.
Goal 2:
The
second goal of this project is to provide medical professionals with a means to
recognize and diagnose a new form of a medical condition known as Periodic
Paralysis to be further known as Periodic Paralysis Plus 10
Syndrome (PP+10) which has no identifiable genetic code,
through a set of criteria to be established with this study.
(This condition has symptoms and
characteristics which resemble a form of Periodic Paralysis known as
Andersen-Tawil Syndrome. Individuals with this form have no identifiable
genetic code and have at least 10 similar symptoms in common, as well as, a
myriad of accompanying autoimmune/inflammatory conditions to be described in
the final report.)
Objective 1:
Gather data from a group of
individuals exhibiting similar symptoms of periodic paralysis, other similar
symptoms experienced regularly yet unexplained, potassium levels and affects of
potassium, similar co-existing diseases and conditions, similar unique physical
characteristics, similar medical history, similar family history, similar
results of medical testing and with or without known genetic mutation
discovered. This group may include individuals with clinical diagnoses of
various forms Periodic Paralysis.
Data to gather:
Description of the paralytic episodes
Other symptoms experienced regularly yet unexplained
Potassium levels and affects of potassium
Diagnosed diseases/conditions co-existing with periodic paralysis
Unique physical characteristics
Unique characteristics regarding medications
Patient medical history
Family medical history
Medical tests completed and results
Clinical diagnosis (if applies)
Other symptoms experienced regularly yet unexplained
Potassium levels and affects of potassium
Diagnosed diseases/conditions co-existing with periodic paralysis
Unique physical characteristics
Unique characteristics regarding medications
Patient medical history
Family medical history
Medical tests completed and results
Clinical diagnosis (if applies)
Objective 2:
Organize data from a group
of individuals exhibiting similar symptoms of periodic paralysis, other similar
symptoms experienced regularly yet unexplained, potassium levels and affects of
potassium, similar co-existing diseases and conditions, similar unique physical
characteristics, similar unique characteristics regarding medications, similar
medical history, similar family history, similar results of medical testing and
with or without known genetic mutation discovered. This group may include
individuals with clinical diagnoses of various forms Periodic Paralysis.
Locate:
Matching symptoms
accompanying paralytic episodes
Matching symptoms
experienced regularly yet unexplained
Matching diagnosed
diseases/conditions co-existing
Matching unique physical
characteristics
Matching unique
characteristics regarding medications
Matching patient medical
history
Matching family medical history
Matching medical tests completed and results
Matching clinical diagnosis (if applies)
Objective 3:
Create a set of criteria
for making a clinical diagnosis for a
new form of a medical condition known as Periodic Paralysis to be further known
as Periodic Paralysis Plus 10 Syndrome (PP+10) which
has no identifiable genetic code based on matching symptoms
accompanying paralytic episodes, matching symptoms experienced regularly yet
unexplained, potassium levels and affects of potassium, matching diagnosed
diseases/conditions co-existing, matching unique physical/other
characteristics, matching unique characteristics regarding medications,
matching patient medical history, matching family medical history, matching
medical tests completed and results and matching clinical diagnosis (if
applies).
Set of criteria:
Symptoms of paralytic attack:
Symptoms experienced regularly yet unexplained:
Potassium levels and affects of potassium:
Diagnosed
diseases/conditions co-existing:
Unique physical/other characteristics:
Unique characteristics regarding medications:
Medical history:
Family history:
Medical tests results:
All else ruled out:
Clinical diagnosis of Periodic Paralysis Plus 10 Syndrome (PP+10)
Objective
4:
Provide the results of this study to a team of
medical professionals who specialize in diagnosing difficult to diagnose
conditions, unrelated to any specialists of Periodic Paralysis or
Andersen-Tawil Syndrome with the intention of the acceptance of Periodic
Paralysis Plus 10 Syndrome (PP+10) as a form of Periodic Paralysis and the acceptance
of the criteria as standard for
diagnosing Periodic Paralysis Plus
10 Syndrome (PP+10) clinically;
without using genetic testing.
The Results :
The Execution
The
information and data obtained for this study was gathered through a series of
four surveys presented to the on-line Support and Educational Group at the
Periodic Paralysis Network. Sixty-one members of the eighty members at the time
of the study participated in the survey. The sixty-one members included:
23% (14)
males ages 13 to 67
77% (47)
females ages 9 to 82
Average age of members 50 years
18% (11) had genetic diagnoses
8 = Hypokalemic Periodic Paralysis
1 = Hyperkalemic Periodic Paralysis
2 = Andersen-Tawil Syndrome
51% (31)
had clinical diagnoses
24 =
Hypokalemic Periodic Paralysis
1 = Hyperkalemic Periodic Paralysis
3 = Andersen-Tawil Syndrome
31% (19)
had no diagnosis
9 suspect Hypokalemic Periodic Paralysis
2 suspect Normokalemic Periodic Paralysis
1 suspect Hyperkalemic Periodic Paralysis
4 suspect Andersen-Tawil Syndrome
First signs of Periodic Paralysis range from birth to 55 years of age
Number of
years presently waiting for a diagnosis range from 2 years to 61 years
100%
experience periods of muscle weakness
75% (46) experience full body paralysis
25% (15) experience no full body paralysis
(2 with genetic diagnoses)
The Description of Paralytic Episodes (Despite the form of Periodic Paralysis or if they were diagnosed clinically, genetically or still waiting for a diagnosis)
Description
of the Paralytic Episodes
Full
body Paralysis 75% (46)
Partial
body paralysis 85% (52)
Periods
of muscle weakness 97% (59)
Blood
pressure issues 49% (30)
Heart
issues 79% (48)
Breathing
issues 70% (43)
Choking
issues 5% (3)
Swallowing
issues 20% (12)
Pain (before, during or after) 85% (52)
Falls/drops
8% (5)
Eyes
closed 26% (16)
Until Later...
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