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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