Lisa,
I am just glad to finally understand that I am not crazy!!

Thank you,
Shelley

foundit1999 <lisa.cherry2sky@...> wrote:
Hi & welcome.

My name is Lisa Schoenberg & have been involved with the Ehlers
Danlos National Foundation for @ 20 years & have been invloved on
several lists for as many years as I can recall.

Your history surely speaks volumes & you may well be on the right
track.

I would suggest that you go directly to the EDNF web site at

www.ednf.org

There is a ton of information on the web site for you to check out &
it will give you so much to think about & learn from.

If I personally can be of any further assistance to you in any
manner, please feel free to contact me, either through the board, or
you may surely email me personally. If so, please email me at
Lisa.cherry2sky@.... And then I can surely make myself
available by telephone if you wish and/or direct you to your most
local support group.

I wish you well & hope you get to the bottom of this so that you are
better equipped to go forward & be sure you receive the appropriate
treatment & support.

If I may ask, what is your name & where are you from? As we have
numerous support groups around the country that should be able to
offer you much needed assistance. As you may have already realized,
though EDS is not uncommon (1:5,000) which is as common as Multiple
Sclerosis, it often goes mistaken for many other disorders.

Once again welcome & I'm sure you have just opened up a whole new
world for yourself & will likely feel a lot better once you know for
sure & proceed on the path of becoming more educated, so you can take
control of this all.

Be well. All the best.
Lisa
~
Lisa C. Schoenberg, RN
President/Founder North Central NJ EDNF Support Group
EDNF International Coordinator
Past Western Regional Coordinator of Local Support Groups
Dedicated volunteer to all those with EDS

--- In ehlersdanlossupportclub@yahoogroups.com, "paintedchicken"
<paintedchicken@...> wrote:
>
> Hi there,
>
> i am in the dx process right now. i finally had someone listen to me
> and not brush me off. My new chiro asked me a ton of questions and
> said "i think i know what's wrong with you." She then wrote me a
> letter which prompted my new GP to refer me to a rheumy. I see
him/her
> this week.
>
> i started tearing ligaments when i was in second grade, my feet
would
> roll over. i have been able to put my foot to the top of my head as
> long as i can remember. my shoulders became an issue as i got into
my
> teen years. sometimes the pain was so intense i couldn't lift my
arms.
> i became a life guard and the repetitive swimming caused my
shoulders
> to get much worse. They brushed me off even though my shoulder
sounded
> like a rock grinder.Since then I have been told it is bursitis,
> tendonitis, etc.
>
> i have had 3 tumors, 2 of a tendon sheath. i have sprained both
ankles
> and one ankle in particular seems to come apart somehow when i am
> walking or if the is pressure at an angle.. ie i went to a yoga
class
> and couldn't do some positions because the weight against my ankle
> would cause it to separate. i fell once while living in the US. i
did
> not have insurance and couldn't afford the $1000 to spend the day in
> the ER but I spent weeks in agonizing pain. I am pretty sure i
> dislocated a rib. my jaw also dislocates.
>
> bruising is out of hand. the bad ones leave permanent marks on my
skin.
>
> my skin is stretchy in some places but not in others.
>
> i could go on but you get the idea.
>
> nice to meet all of you. Any suggestions and tips when i go into the
> rheumy would be great.
>
> thanks
>






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