Hello All,
This morning one of our new members expressed, sadness and frustration over the fact, that after searching for a diagnosis and proper treatment for her obvious Periodic Paralysis (PP) symptoms, she has lost all confidence in doctors. I responded with what felt like I was writing a, “Yes, Virginia, there is a Santa Claus” letter. In this case it was “Yes, Virginia, there are very few doctors who know about Periodic Paralysis.” The following is what I wrote:
This morning one of our new members expressed, sadness and frustration over the fact, that after searching for a diagnosis and proper treatment for her obvious Periodic Paralysis (PP) symptoms, she has lost all confidence in doctors. I responded with what felt like I was writing a, “Yes, Virginia, there is a Santa Claus” letter. In this case it was “Yes, Virginia, there are very few doctors who know about Periodic Paralysis.” The following is what I wrote:
Dear Virginia,
Most of us who have Periodic Paralysis do not have confidence in doctors or medical professionals anymore. Periodic Paralysis is a mineral metabolic disorder, but neurologists who typically diagnose and treat it, see it as a neurological disorder and try to treat it as such or due to lack of education about it or misinformation about it, they do not recognize it so fail to diagnose it. The misdiagnosis or lack of diagnosis leads to mistreatment with wrong medications or no treatment. Either way, the individual with PP, becomes worse. This is called iatrogenisis, which is harm that is preventable from medical treatment or a lack of treatment.
Periodic Paralysis should be able to be treated by
an endocrinologist, because they are familiar with the thyrotoxic form of PP,
but those who will or know about PP are difficult to find. The so-called
"specialists" are involved in the research end of it but unless you
are genetically diagnosed or absolutely a "perfect fit" for their
studies you are not diagnosed or your diagnosis may taken away. This happened
to one of our members. She was later found to have the genetic mutation!!!!! I
have seen 5 specialists and discussed my case with 3 others. What I am saying
is true. None of them could/would help me.
My own research and experiences have led me to know
the best way to find a doctor to diagnose and treat your symptoms. We created
our website, our support group, our blog and wrote our books to share these
ideas with others.
We find it best to locate a good MD, usually an
internist is best, who is willing to work WITH you and learn WITH you. You do
this by calling the different doctors in your area; a clinic is the best, and
talk to the office managers. Tell them your story. Ask them to talk to the
doctors in their office or clinic about it and one will surely step forward who
wants to work with you. They will call you back with the name of a willing
doctor. You, then, need to take the lead with the information and with your
treatment.
The first place to start is your diet, strictly organic
and as pH balanced as possible. Then discover all of your triggers and avoid
them. Gather as many home medical instruments as you can to monitor and track
your vitals, at the very least a wrist blood pressure cuff, finger oximeter,
and potassium reader if possible.
Gather your own team of specialists as needed
through and with the help of your MD or internist. They will know or can find
physicians who will work with them and you.
IF YOU FEEL YOU MUST (not my advice), experiment
with the medications and different types of potassium available, but be
extremely careful as most have severe side effects and can make you worse. Do
not take them just because everyone else does and the doctors say to do it,
especially if your symptoms are made worse by the drugs, and if you do not have
a genetic mutation found yet. Some forms shift both high and low potassium and
some shift within normal potassium ranges so taking potassium may make it
worse.
Each one of us is a little different, even in the same family, and we must find what works for us as an individual.
Each one of us is a little different, even in the same family, and we must find what works for us as an individual.
It is hard work to totally manage and direct your
own care, but it seems to be the only way to do it for most of us. Accepting
that fact is also difficult. I was dying until my husband and I took charge of
my care. I went from four or five severe, full-body paralytic episodes a day
lasting for several hours each to one or two attacks a month with much less
severity, except for the episodes I have at night in my sleep. It is still a
game of experimenting at times and trying new things. We are always trying to
balance while “walking the tightrope.”
I wish I could tell everyone there is a "quick
fix," "magical cures," "healing medications," and
"perfect treatments," but I am sorry to say I cannot. The plan we have written about seems to work
the best.
Description and explanation of all of the above
information can be found in articles on our website and on our blog, in
discussion on our support group, as well as in our books, "Living With Periodic
Paralysis: The Mystery Unraveled" "The Periodic Paralysis Guide and Workbook: Be The Best You Can Be Naturally" "A Bill Of Rights For Periodic Paralysis Patients" and "What Is Periodic Paralysis?: A Disease Like No Other."
www.periodicparalysisnetwork.com
http://livingwithperiodicparalysis.blogspot.com/
DISCLAIMER: There are some very good doctors out there who are willing to help. But when someone has been through the wringer, it is best to try a new approach. Over 30 doctors in 6 years and about 6 more since then, gave us a good and real look at what most of us are going through. For those individuals, this may be an approach that will help them and give them some hope.....
Until later...
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