Hi Sandi and Angie,
I have been following your e-mails back and forth and just want to
jump in and say hello and how sorry I am for the news you have just
received. My name is Linda - I am 44 - the mother of 6 children, 5
of them have EDS - type III along with myself. The baby who will be
2 tomorrow hasn't been diagnosed yet, but I am sure in time she will
follow in all of our footsteps. I also have just been diagnosed with
Fibromyalgia. I guess the 2 can be seen together. The diagnosis
has been a great relief, as the pain I had for many years is now
being taken seriously and the medications have made a BIG
difference.

Angie,
I work with a woman who lost her newborn son to Mitochondrial
disease. We have a walk every year in his honor. I believe that
there is a great Organization for Mitochondrial disease that you
could tap into for help and support. If you need any more info just
let me now.

Except for my sister and her three children I don't know anyone else
in my area who has even heard of EDS. We live in Massachusetts.

Take Care,
linda



--- In ehlersdanlossupportclub@yahoogroups.com, angela salisbury
<angelasalisbury@...> wrote:
>
> Hi Sandi, Very interesting! I have had a horrible day sorry.
You know it is one of those days when you need a friend and nobody
is home. Well we got kind of an answer on my kids today. My son
has had 7 MRI's done and finally an answer, but it is not good. I
just found out all three of my kids have Mitrochondrial Disease.
The type they have is EXTREEMLY rare. It doesn't even have a name.
But this means the child of mine whom I thought had no real problems
that could take her life, I was wrong. They told me today that she
will adventually probably go blind. I am devistated. She is so
brite and smart, I just thought I could keep my hopes up and she'd
be o.k. But my other two children definately have it too.
>
> O.k. I need to quit writting about this cause I could go on and
on and cry my eyes out forever! I would in your case be rasin a fit
with some doctors! Tell them you want to see a rumatologist (?)
Cause your symptoms sound exactly like Fibromyalgia. My mom was
flexible when she was younger but is stiff now due to the
arthritis. She has back,neck,shoulderproblems. Her hands and feet
are the worst. she is in constant pain. She bruises HORRIBLE! And
HORRIBLE head aches. She also cuts easy and burns easy. She has a
lot of the same issues as you. Just maybe the Lung thing and Uterus
rupture was a freak thing, but I would say the pain and joint issues
is not a freak thing. They need to send you to the right type of
doctor! I would have said POTS if you had a lot of pain in your
legs and swelling of your feet and neck problems, but what you
discribed is not POTS. You know you can have more than one thing,
like both Fibromylagia, and EDS. Didn't you say your
> Bladder ruptured too? I feel for you! Those are painful things
and nothing you can control. My heart is with you!
>
> Angie
>
> MLSLNG99@... wrote:
> Angie,
>
> Thanks so much for replying. I am in the healthcare field here in
New
> Jersey I work with many neurologists and I am an MRI tech so if
there is anything
> I can do to help with your search regarding your children let me
know.
>
> Re: my diagnosis. I started with chest pain and then it became
shoulders
> and wrists. My neck and lower back have always bothered me but it
seemed to
> get worse. Because my pain is on both sides and upper and lower
quads I
> thought Fibromyalgia too. I even said that to the Dr. who
diagnosed me with EDS.
> He asked about my pain then asked about my skin whether I bruise
easily(yes)
> and if I could touch my nose with my tongue(yes)and if I was
> doublejointed(yes). he hands me a piece of paper that said EDS
classical and told me to
> come back in 6 weeks. I immediately started the research. My
maternal
> grandmother had skin fragility and early onset of arthritic pain
in her hands and
> wrists. Her mother too. My mother was diagnosed with RA
(rheumatoid) in 1997.
> She also bruised easily.
>
> I have had an uterine rupture with my second pregnancy after
trying to go
> vaginal birth after c-section. I have asthma since having half my
left lung
> removed from infected blebs that turned in to a cavetatum
pneumonia. I am
> nearsighted and have worn glassed since 5 years old. I used to be
more flexible
> but now have too much pain. I do have a problem wth the bones in
my wrist
> separating or disassociating as they call it. Lately I crack my
neck
> constantly like people crack knuckles and this is causing me
headaches and neck pain.
>
> Thank you so much for answering my letter it feels so good to have
someone
> "listen".
>
> Sandi
>
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