This was taken from our first book about Periodic Paralysis: Living
With Periodic Paralysis: The Mystery Unraveled
This was geared for Andersen-Tawil Syndrome which is the most severe form and
has physical and other characteristics that accompany the symptoms that most of
us are familiar with. (I, and other family members, are diagnosed with this)
I was able to gather the needed information by contacting family members by
email and the phone with a survey asking several questions and made a video
available for them to see me during paralytic episodes. The following is the
note and the questions I sent:
“Hello, family members,
Please bear with me. This email may be
a little strange and is not meant to scare you. However, the doctors are
very close to a final diagnosis for me, which appears to be hereditary.
I need to know if other family members have these issues for the medical
records. I need to ask a few rather odd questions. I hope you will help me
with this. If I get this diagnosis, you will need to know about it. It is
a very, very, rare and serious disease and will need to be treated if anyone in
your family has it. Even if they have some of the symptoms, they may not
have it get serious, but they will need to be evaluated to make sure, due to
the heart issues. And, hopefully, to avoid going through what I went through if they
can get proper treatment.
Do you
have a problem with low or high potassium?
Do you
have scoliosis?
Do you
have webbed or barely webbed 2nd-3rd toes? (Some of us have it; in fact,
Shari's son was born with them fully webbed.)
Do
you have curved toes?
Do
you have a pinkie finger that curves toward the ring finger?
Do you
have unusually short fingers?
Do you
have a small mouth with crowded teeth?
Do you
have small lower jaw?
Do you
have teeth missing (born without them or never came in after the baby teeth
fell out? (i.e., I never had wisdom teeth and after my eye teeth fell out there
were not permanent ones to replace them...so I am missing 6 teeth)
Do you
have heart palpitations, fast heartbeat or any kind of heart problem?
Do you
have "clubbed" thumbs?
Do you
have problems doing things with their hands and arms above their heads?
Do you
have periodic muscle weakness or paralysis? (May be just a feeling of a limb
going to sleep, especially after sitting for a while.) (May wake up at night
with hands numb or trouble walking upon getting up in the morning.)
Do you
have periodic extreme, muscle weakness after eating large meals with a large
amount of carbohydrates, or sugar, stress, heat or cold, taking medications,
exercise or exertion (can be delayed to the next day)?
Do you
have problems walking upstairs or uphill?
Do you
have weakness, dizziness etc. after fasting?
Do you
have episodes of passing out?
Do you have problems with side effects or opposite effects of
prescription medications or over-the-counter medications?
Do you
have problems with anesthesia or lidocaine?
These things may be very subtle...not real obvious...
I know this all sounds a little crazy,
but it is very important to our family and me. If I get this diagnosis, you
will need to know about it. It is a very, very, very, rare and serious disease
and will need to be treated.
I hope
none of these things are a problem for you. That would be great news.
If you want you may call to talk about this.
Love you, Mom, Grandma, Susie, Aunt
Susie”
Many
of my family members responded. The answers amazed me and confirmed for me that
we did indeed have a larger problem in my family than I had even realized. Much
of my extended family also had similar problems.
Our books are available at:
PPN
Books
www.amazon.com/Susan-Q-Knittle-Hunter/e/B00HVEBSSQ/ref=dp_byline_cont_pop_book_1
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