scared
Laura
I found this site of yours yesterday and now I've already read all the
posts here. I'm very happy I've found you. Didn't think we have a
support group:)
So, my name is Laura, I have been diagnosed CED at 6, and even that
just because my mother who is a doctor insisted that something is
wrong when they said that everything is normal. Now I'm 33 years old.
I had pains as a child, then they faded a bit, last years getting
worse. Among other involvements and weakness I have CED also in skull
and that worries me the most. I have reccurent paresis of facial nerve
and at age of 27 lost my hearing. Now I'm dealing with that
communication situations mostly and lately with aggravating pains. I
didn't use drugs for relieving pain before, I just thought that it
would go away or that I'm tired or lazy,.. And I also didn't want to
use much drugs since of all possible side effects. Last year when I
have a flare up I use paracetamol. Everytime I have paresis of facial
nerve I use prednisolon. Last time I used it for flare up too. It has
a good effect on me, also get more apetite but I'm worried about side
effects so I try to minimize it as possible as I can. When I read your
posts yesterday I became really scared. Haven't been scared like that
for long time. I knew what problems can appear with this disease, but
your stories really put me on real ground. Especially those ones with
head surgeries and brain and nerve problems, since I have quite some
problems with that (deafness, recurrent paresis, my vestibulatory
apparatus also doesn't work properly and I compensate with my eyes..).
I would like to know, how often you go to your doctors? Do you all go
and see that specialised doctors? I'm from Europe and I have the
feeling that no doctors know anything about it here.. I mean they do
some x rays or so, but then send me home and nothing much. When I was
at otolaryngologist (for hearing and paresis) they said that until it
won't be very bad, they don't do anything. And I don't know what is
very bad for them.. I just know that everytime I have paresis there
are concequences and it gets worse in a way of "poker face" as one of
your members described. And this doctors were the only ones who at
least got to find what CED is.. The GP I was going to didn't know what
was after 10 years I had been going to her.. And when I was working in
the hospital for a while doctors haven't ever heard of it. Like you
said-blank stare.. What if I needed urgent surgery or something as
one of your members? Should I go to US and find that doctors you
mentioned before and make plan what to do if something happened? Uh,I
feel I have a bit of crisis now..
Sorry for such a messed up message.. and thanks for every reply.
Hugs,
Laura
Fabio Pinheiro
-----Mensagem original-----
De: Engel...@googlegroups.com [mailto:Engel...@googlegroups.com] Em nome
de Laura
Enviada em: terça-feira, 11 de agosto de 2009 04:29
Para: Engelmann's Syndrome
Assunto: CED Support Group (Google) scared
Laura
I'm from Slovenia..
Fabio Pinheiro
Hi.
I'm from Brazil. As a third world country, the resources to treat the
disease are very limited.
My wife is suffering much pain in a time of crisis and we lost looking for a
solution that does not exist.
What do you take or has taken to minimize the pain ?
Excuse me for my poor English.
[]s.
Fabio
-----Mensagem original-----
De: Engel...@googlegroups.com [mailto:Engel...@googlegroups.com] Em nome
de Laura
Enviada em: terça-feira, 11 de agosto de 2009 09:09
Para: Engelmann's Syndrome
Assunto: Re: RES: CED Support Group (Google) scared
Laura
I guess some of the other members could tell you more about how to
minimize the pain since they have a lot more experience. I'm not
relying to the doctors, maybe they expect that I would already know
what I need to know and they don't bother much. I talk to my mum and
we decide what we think it would be best for me. For now it has been
ok. First I was taking NSAID (naproxen) which is antiinflamatory, but
since I had some problems with high pressure (later I discovered that
I have high pressure only during the flare up), doctors advised me to
take paracetamol instead, because naproxen can higher the pressure as
the side effect. So now I take paracetamol when it hurts a lot
(sometimes doesn't work) and I lately decided to combine it with
prednisolon. Paracetamol just minimize the pain, but prednisolon stop
the activity in bones so the flare up goes away faster. At last crisis
I decided to take prednisolon at the begining of flare up for some
days and it worked for me. Once before without prednisolon it took me
a long time to get better. But I try not to take prednisolon
constantly since it also have side effects.
How is your wife dealing with it?
Take care,
Laura
PS: Don't mind poor English, as long as we understand each other.
Anyway, mine is not that good either.
>
> - Prikaži citirano besedilo -
Christina
I am so pleased that you found our group, but I am sorry that some of
the things you may have read might have scared you. I can assure you
that this is nobody's intention!
Unfortunately though, there seems to be a lot of things that CED can
cause that none of us were aware of until it happened to us, and so we
are just trying to prepare each other for what MIGHT happen in the
future so that we are aware of the signs to look out for!
I have suffered from CED since I was 3 years old, I am now almost 29.
For many years, up until I was about 21, I only ever suffered with
pain in both my lower legs and this seemed bad enough!
Then in 2002 I developed problems with my hearing and then my vision
became affected also, up to the point that I could barely see. I was
sent to see a neurologist who diagnosed me with Benign Intracranial
Hypertension (BIH), which is a condition that causes the pressure of
the fluid surrounding your brain and spinal chord to increase. This
was confirmed when they performed a lumbar puncture and measured that
the pressure of my Cerebro-Spinal Fluid (CSF) was 41mmHg, when it
should have only been about 20mmHg. They drained off some fluid and
started me on a course of water tablets called Acetazolomide (Diamox)
to maintain the lower level of fluid and therefore lower the pressure.
This returned my hearing and eyesight to normal.
I still suffer with the BIH as do some of the other CED sufferers, but
it seems that not enough is understood about either condition to say
how or why this occurs and if there is a definite link between the 2
conditions.
Then in 2004 I began experiencing severe pain in my forearms and was
sent for an Isotope Bone Scan, this showed that the CED had become
active in my arms also.
Most recently.. In the last few months.. I have experienced another
flare up in my CED. I am sure that you get these flare ups too?
This time my skull has also been hurting, along with my arms and legs.
As you can imagine, its very unpleasant and despite being on 3 types
of medication for pain, they still only work to a limited degree.
i am awaiting further appointments with my Rheumatologist and
Neurologist to see if anything can be done to relieve the headaches
that I have suffered constantly with for weeks, as its really getting
me down!
Unfortunately you have met me when I am at my worst and so I must seem
like a very miserable person, but I can assure you that during the
good times between our flare ups we are all very happy and positive
people.
Please know that you can contact me at any time and I wil try to help
as much as I can, my email address is
welshan...@btinternet.com
For now I must apologise for my misery, but I am truly exhausted and
in a lot of pain.
I hope we can continue to keep in contact.
Best wishes,
Christina. x
Mary Costello
ago! I just wanted to comment on Christina's note to you. Christina is
NOT a miserable person at all! Christina you are AWESOME! She is the
one that started all these groups and it always the one that will have
an encouraging note in your e-mail inbox that is sitting there ready
for you!
The great thing about our group is that we are so caring and concerned
about each other that we are there for each one that is going through
the bad pain. It's so great because what CHristina started had made it
possible for all of us to connect and be friends. She may think she's
miserable and I think we all know when we feel like that.
Christina you are the most awesome person and I know you are going
through so much right now. I wish I could take that pain away from
you. Remember when you are like this to just let it happen. I know
its' hard cause we are used to being active that when we are down and
in bed it makes us feel guilty like we should be up and around. No you
shouldn't! You should be laying down and you don't get up and around
until you really feel you can. We love you and know you are not doing
this because you want to. It's because you need to!
Laura, you are going to love everyone in this group! We are from
everywhere around the world and we all have lots in common!
Hey CED group: Hang in there and let's all stay in touch! We love you
Christina, hugs and kisses to you!
Talk to you soon Group!
Lots of love,
Mary from Calif!
Ingrid
Hi Laura
First off a big greeting to you, hope you feel good.
The first thing that comes to mind tell you is what a doctor told me that the progression of CED to have a limit
ie not necessarily have all the symptoms described here,you will have
The doctor who treats me now is a rheumatologist, I see it every month to control alkaline phosphatases and doses of prednisone to take, the idea is to take the lowest dose that helps you feel good.
I have had good results in general, less pain, better mobility and mood, these last few months phosphatase increased, and the pain started again, so I think next control adjust the dose of prednisone, side effects at the beginning were more noticeable (but nothing so serious), now take 2 years with this treatment, my doctor like I had researched about this disease because it is not common.
Never take much paracetamol. We must also take into account that each agency have more genetic influence in the development of the disease.
I currently live with my parents, I am with pains (in treatment) is limited my mobility and strength too.
A hug and I hope this information helps you in something
I hope you understand my english
Laura
I never thought you would write your stories because your intention
would be to scare me or anyone else. It's just me who wasn't aware of
the whole thing what might happen or better I got scared that I should
be doing something before, get prepared to know what to do if
something happens and it struck me that I wouldn't know what to do. On
the other hand it seems quite strange to me now, that despite all the
problems I had, I never thought of myself to be sick. I mean all stuff
was like problems and not a part of something bigger. I can't really
explain. It seems strange that even though I knew a lot of things I
had a really bad week now, become depressed, felt like I was losing
something and saying goodbye to something.. I don't know why I
overreacted like that. Now I'm better. And it's so nice to know that
you understand. Christina I think you are great,too (and don't even
know you yet), I understood what you meant being miserable and I hope
you'll be better soon. I had a flare up few months ago and I felt
miserable. Lost even excitement of things I like to do, at first
fighting my bad conciousness that I should be doing stuff, and I was
relieved when my mother backed me up on resting and having few days
off work. I'm so glad I can rely on my parents in need. And I'm happy
I finnaly searched the internet and found you:)
Hugs
Christina
I think that we all struggle from time to time with this condition as
it is hard to live a life in pain, no matter what it is caused by!
CED is frustrating and scary because there is so little known about it
and so we have no guidleines to follow and no idea what the future may
hold for any of us. Of course we must all be positive and hope for the
best, but some of us have been unlucky and developed further problems,
or are affected more severly and are therefore limited as to what we
are able to do.
I wish I had a magic wand to make it all better for all of us, as it
upsets and frustrates me to know that there are others who have to go
through this too. And to know there are young children with CED is the
hardest of all, because even though I went through the tough times as
a child, I would never wish them on anyone else!
It is also hard to make others understand that when we hurt its not as
simple as taking a trip to the doctors to be "fixed" as I am sure you
have all realised that the doctors dont know that much more about CED
than we do!
Our biggest problem is that because we are such a small minority we
are not recognised as needing help because very few people know that
we exist. According to one medical paper I read there are only about
200 people in the world with CED. And so it is unlikely that anyone
will spend huge amounts of money to research the disease, when they
will only be helping a handful of people. Unfortunately it all comes
down to money, which is a sad prospect as all of us are wonderful,
caring and incredibly talented people in our own right and we could
contribute so much to the world, if only there was some help for us!
I am working on trying to set up a CED charity, which will at least
make it possible for us to all meet each other some day.. I doubt we
will ever raise enough to fund any serious research, but we will
try! :o)
Would you be willing to write a little about yourself and how your CED
affects your life, so that I can include you in my presentation? And
please post a photgraph of yourself so that we can all see what our
new friend looks like? :o)
Keep smiling! xx
Ingrid
Hi laura
I hope you are fine
I'm from Chile South America , have 40 years old.
I live with my parents I dont have husband or children is complicated , but family support, parents, siblings, nephews is wonderful, they are a great support.
There are good and bad seasons with the disease, but we must enjoy the goods moments To carry on
All are moments
Phosphatases on the normal range is 44 to 147 IU / L (international units per liter). .... In my experience, when phosphatases down ... decreased pain.
I leave you some links, where I was informed about this.
A big hug
http://www.lookfordiagnosis.com/cases.php?term=Camurati-Engelmann+Syndrome&lang=1
http://ghr.nlm.nih.gov/condition=camuratiengelmanndisease
Ingrid
Hey Ingrid,Thanks for your mail and support.Can I ask where are you from and how old are you? Do you have a family of your own? I don't. I too live with my parents lately, not because I couldn't on my own, but when I had a flare up few months ago I was really happy that I wasn't living on my own. It is nice if you have some help and I know that I would become depressed being by myself in the times of not feeling good. It always gets to me sooner or later. So it is fine to have some company and feel some love. I don't have a boyfriend either.You were asking about alkaline phosphatase on CED google group, do you know in which measures this numbers are? I think that in Europe we have different ones, since my Alk.phosp.is 3,5. Does this maintaining low AP helps with growing bones and pains?Hugs,Laura
Kylee
My name is Kylee and I am from little ole New Zealand...a long way
away from you.
I think I am the 2nd known person in NZ with this wretched disease.
I was initially diagnosed with Ribbings Disease in 2006 /2007 which
affects the lower legs only but for some strange unknown reason, it
has progressed and now I have been clinically diagnosed with CED as
well.
I am under the care of a bone specialist who is very interested in my
progress which is great.
Treatment wise I manage it (not very well) with Naproxen slow release
tablets, Iboprufen, Codeine Phosphate tablets and paracetamol.
I am also undergoing bisphosphonate treatment using a drug called
Pamidronate. This is supposed to slow the bone growth down.
I was finding that after my 4th infusion, I started to get relief but
then I fell off the radar with my Dr after Christmas and it took 6
months for another infusion and it has kind of reversed all the good
that we acheived. I have now got treatments booked at 10wk intervals.
Just wondering if you can suggest this to your Dr?
My work is starting to get a bit difficult with me in the sense now
that I have to provide a medical certificate everytime I have a day
off even when my specialist has confirmed that it is likely that I
will need time off due to depleted stamina.
It's a really sad disease in that I feel that I am getting worse and
worse but you know what, it is all the more reason to live and live!
That is what I try to do and even though some days I just want to
sleep and sleep and sleep...I force myself to get out there as I am
buggered if I am going to let this bring me down.
Good Luck for the future,
Hello to all my lovely CED people all around the world.
Kylee xoxox
On 15 Aug, 05:01, Ingrid <soloing...@gmail.com> wrote:
> Hi laura
>
> I hope you are fine
>
> I'm from Chile South America , have 40 years old.
>
> I live with my parents I dont have husband or children is complicated ,
> but family support, parents, siblings, nephews is wonderful, they are a
> great support.
>
> There are good and bad seasons with the disease, but we must enjoy the goods
> moments To carry on
>
> All are moments
>
> Phosphatases on the normal range is 44 to 147 IU / L (international units
> per liter). .... In my experience, when phosphatases down ... decreased
> pain.
>
> I leave you some links, where I was informed about this.
>
> A big hug
>
>
> http://ghr.nlm.nih.gov/condition=camuratiengelmanndisease
>
> Ingrid
>
> 2009/8/14 Laura <laura.found...@gmail.com>
>
>
> > Hey Ingrid,
>
> > Thanks for your mail and support.
> > Can I ask where are you from and how old are you? Do you have a family of
> > your own? I don't. I too live with my parents lately, not because I couldn't
> > on my own, but when I had a flare up few months ago I was really happy that
> > I wasn't living on my own. It is nice if you have some help and I know that
> > I would become depressed being by myself in the times of not feeling good.
> > It always gets to me sooner or later. So it is fine to have some company and
> > feel some love. I don't have a boyfriend either.
> > You were asking about alkaline phosphatase on CED google group, do you know
> > in which measures this numbers are? I think that in Europe we have different
> > ones, since my Alk.phosp.is 3,5. Does this maintaining low AP helps with
> > growing bones and pains?
>
> > Hugs,
>
> - Show quoted text -
Fabio Pinheiro
My wife wrote a letter with help of a friend Who know english.
Can you send It to Dr. Wilcox ?
Can you help us with these questions?
Thanks for all others that send letters for my wife, but we don’t have time
to translate all those. We will answer for all... thanks again
Above is the letter
Dear Dr. Williams,
My name is Gizele Pinheiro. I have Camurati-Engelmann disease in my whole
body with frequent pain on my hips, spinal lumbar and my left leg (from my
knee down). I am currently under treatment by a Rheumatologist who
prescribed 40 grams of corticoids' (cortisone) daily in order to keep me
from having pain. I have also received 2 Aclasta injections to help delay
the disease, since it is progressing rapidly. I'm 38 years old and was about
12 years old when diagnosed with the disease.
I have a bone growth outside my skull in the forehead and two in my coccyx
bone. Right after my last application of Aclasta, I had a terrible pain in
my whole body and no medicine would help. I was suffering for more than a
month. Through this time, I thought I was going to die. Now with the
merticorten I feel better. Do you think Aclasta is advisable in my case?
The doctor said that part of my leg is hurting because it is growing and it
gets hot and pulsating. Would you be able to advise me and tell me if I'm
receiving the right treatment? Is the disease terminal?
I am concerned because I have a 4 year old son and I'm afraid I'm not going
to see him grow. I'm very tall, 5' 7" and about 114 pounds (1.75
centimeters and about 52 Kilos). I am lame in one leg, I have tendinitis in
my arms . I am able to drive and work . However, now I'm absent from my job
because I can no longer be sitting 8 hours a day.
I am looking forward to hearing from you . Thanking you in advance.
Kindest regards,
Gizele Pinheiro
giz...@funcate.org.br
Sao Paulo, Brazil
-----Mensagem original-----
De: Mary Costello [mailto:handy...@cox.net]
Enviada em: terça-feira, 11 de agosto de 2009 21:09
Para: Fabio Pinheiro
Assunto: CED group (google)
Hi Fabio my name is Mary and I am one of the people on the CED group.
Welcome to our site. I am so sorry to hear about your wife.
There are a few things she can do for pain that might help until she
can see a doctor. The first thing she can do is to take warm baths.
This will sometimes help the pain by soothing the muscles in her body.
Where is she feeling the pain the most? Does she have pain in her legs
or arms, or head? The pain I have is in my legs mostly and I have pain
in my head too.
I am on very strong prescriptions because I am in pain all of the
time. Some people with this disease only have a little pain and then
there are others, like me that have a lot of pain. It sounds like your
wife has a lot of pain. Let me know where the pain is.
I know the leading doctor that studies this disease and I can ask him
if there is any way he could find you a doctor. I know you live in
Brazil right? The doctors name is doctor Williams Wilcox. He knows the
most about this disease and maybe he can help us find a doctor in your
area. I see that it might be hard because of where you live but I
don't mind trying to help. I would love to help get your wife some
relief of the pain. What is the largest city near you? It has to be
the largest city you can get to. Once I know the largest city, I will
get in touch with Dr. Wilcox and see if he knows anyone that could help.
There is a drug called prednisone that can help with the pain but it
is a drug that has alot of side effects so you have to be under a
doctors care to be on this medication. As far as the pain is
concerned, any kinds of anti inflammatory can sometimes help with the
pain. In the United States we have a drug called Advil or Mortrin. The
drug name is Ibuprofen so if you can find some ibuprofen that might
help. Aspirin does great for bone pain but if you take too much it can
hurt your stomach so you have to be careful with that. As you can see
with all pain type medicines you have to be careful because of the
side effects. When I was taking aspirin years ago, it helped a lot but
I had to stop taking it cause it hurt my stomach.
What is your wife doing for pain now? Do you have any children? If you
don't mind me asking, how old is your wife? I know for me i hurt a lor
more before I get my period (menstruate). That is always a time where
I feel more pain. If you can figure out the times where she feels the
most pain than you can start to know when and how you should take
medicine.It will help me a lot if you can tell me what she does now
for pain and what her daily life is like. What does she do during the
day. Rest is always the best thing for pain. Make sure she is not
doing any jumping, running, bicycling, or anything like that. That
will cause the pain to get worse. Doing exercies in a pool of water
works really well. The doctors say that is the best way to get your
exercise. It is not good to stay in bed for long periods of time
because our body will become stiff and our muscles will have a hard
time. So rest is good but so is gently moving your body.
I do yoga and it helps a lot. I don't do a bunch of the hard stuff. I
do the stretching and after about 15 minutes my pain starts to get
better.
These are just some of the things that you can do until you can get to
doctor that can prescribe medication for you. As soon as you answer
some of the questions I will write back.
Please tell your wife that paying attention to her breathing is a
really good thing to calm yourself when your in a lot of pain. Tell
her to lay on her bed and to slowly breath in through her nose and
then exhale slowly through your nose. Do this for about 10 minutes and
it helps a lot.
I am so glad that you found our group. We are all her to help each
other through all the pain. We share the good times and the not so
good times. We are here for you and your wife. Please tell her that
for me.
God Bless and we'll talk to you soon,
Mary
handy...@cox.net