Hello

[Loll]

Hi everybody

I'm so happy I have found you guys. I thought I was going mad. I
have had lower and upper limb pain pain since I was a small child. I
was finally diagnosed when I was 27 when an exasperated GP sent me for
a leg X-ray to prove there was nothing wrong!!! I have been self
treating for the last 10 years using a tens machine and will power but
I can't do it anymore, I am now 43. My pelvis, clavicles and skull
base are also involved and I am now experienceing vertigo and
deafness, which is really scarey. My current GP has never heard of it
and sent me off for tests for rhuematism, and physio. The physio
asked me to spell it and then was surprised she couldn't find anything
structurally wrong with my knee except muscle weakness. I am going
mad?

Does anyone out there have skull involvement too? I have read some
really scary old papers on Pub Med that discuss the benefits of
reboring your skull!

Loll x

[Christina]

Hello Loll.
Welcome to our group. I am so pleased that you found us and we cannot
wait to get to know you.
We are all affected by CED in different ways, but I know that some of
our group members do have problems with the thickening of the skull,
some of them have had surgery and I'm sure they'd be happy to tell you
about it once they find out you have joined our group.
Every member of this group has CED or has a child with CED and this
group was set up so that we could all confide in each other for
support and advice. It helps a great deal just to talk to other people
who know what it's like to have CED.
I think you'll find we are all pretty easy-going, and always happy to
help.
Where are you from? I'm assuming from your email address that you are
British?
I am from Swansea, South Wales and it would be really nice to get to
know someone else with CED who lives in the UK.
Look forward to hearing from you!

Best Wishes,
Christina. x

[Lauren]

Hey Loll

My name is Lauren, i'm 24 and live near Sydney (my parents call me
Lollydoll or Lol for short)
I was first diagnosed with CED at age 2 (after numerous medical tests
and examinations and biopsy's they finally did an Xray and discovered
i had CED). I was severely affected in all my long bones as a child
and my skull (upper jaw).
I now have a little of it in my hips, but i still experience pain in
my long bones, and during a flare up it can spread to my hands, feet
and skull.

Recently i went to a physiotherapist who noticed the muscles in my
knees are very weak, hence my left kneecap falls to the right of my
leg and feels as though they will dislocate whenever i walk up stairs
or walk for more than 20 mins. The physio taught me how to strap it
with medical tape to help support the kneecap and surrounding muscles,
which will hopefully reduce the pain a little - so perhaps you could
try something like this for your knees.

In regards to dealing with the CED pain, if you head over to our tribe
site and become friends with all of us there you will have access to
our medical history/information and other suggestions for dealing with
the pain (including without meds - massage, heat therapy, etc).

I'm looking forward to getting to know you more, I hope you enjoy some
great friendships here, have a giggle or two and find strength in the
support we offer one another during the hard times. Welcome Loll!
Take care,
Loz xxoo

(ps - get used to all doctors/medical professionals giving you a blank
stare whenever you mention CED to them from now on!!!!)

[Mary]

Hi Loll!\
My name is Mary and I have suffered with CED my whole life. I was
diagnosed when I was 17 after I was told that I had social problems, I
didn't want togo to school,it was all in my head! The soctors did x-
raysof me standing up and there it was! I have CED inall my long
bones, my hips and my skull.

I started with the vertigo and seeing black around 2000. It started in
one eye and after time it went to both. No one knew why it was
happening. after 2 years of seeing about every doctor known to man I
went to my CED doctors in Los Angeles. they sent me to another handful
of doctors. One of the was a doctor by the name of Dr. Kraus. He is an
eye doctor and told my husband and I that I was going to go blind if
something wasn't done soon. He said that I would be blind by Christmas
and it was the end of August! By this time I was walking into walls
and stumbling like I was drunk. I didn't know it but my mouth started
drooping and so did one eye. Dr. Kraus sent me to a brain surgeon by
the name of Dr. Black. He is a world renowned brain surgeon and has
many famous clients. He referred me to his partner who is a pediatric
brain surgeon by the name of Dr. Danielpour. He said there was no
surgery for what is wrong with me and that he has a team of doctors he
got together to make up a surgery to help me.

Basically my brain was under a lot of stress because the bone disease
wasa making my skull too thick. They pressure on my brain was causing
pressure on the Optic Nerve. Because the Optic Nerve was so inflamed
every time I moved my head everything would go black and then back
into focus again.

I had been up on a ladder trimming some trees, I lost my balance and
fell off the ladder. I broke my leg and ankle. Because I have CED my
bones are almost impossible to break. Except when your falling off a
ladder and your 6 feet above the ground! When I landed I realized that
my right foot was pointing to 20 after on the clock and my leg was
totally straight! it was very painful. Since my bones are so hard my
leg and ankle shattered instead of breaking. I was in a cast for a
year. Later that year is when I found out that I was going to need
Brain surgery. Dr. Danielpour made up the surgery and on Sept 10, 2003
I went into surgery, the doctors cut me from ear to ear and thinned
out my skull and replaced many parts of my skull with titanium plates.
I had 51 staples in my head when I came out of the surgery! I can't
believe I lived through something that intense!

Dr. Bill Wilcox is the most educated Doctor on CED or PDD. He is at
Cedars Sinai in Los Angeles. If you need a doctor to diagnose you he
will do it as a part of research. You can come to Los Angeles and he
will have you tested.

We all deal with this terrible disease and we are extremely supportive
of each other. We love to have each other cause it really makes us
feel like we have friends that totally understand what we are going
through. I am so thankful for this group.

Please let us know if there is anything you'd like to know about us.
You've got friends that can help you through the tough times!

Hope to talk to you soon,
~Mary Costello