< bit long > re: New to EDS... questions.

February 19, 2002

Hi Tori, and welcome!

You have joined a very caring and supportive group of people here at

CEDA...and will likely learn a lot...

In response to your questions, I'll tell you (somewhat condensed) about

some of what I have in common...

I'm Cheri, 46 have HEDS (formerly EDS 111...hypermobile type) and was

only diagnosed 2 years ago...after increasing problems and *only* now

know, because I looked up " double-jointed " on the internet...and

followed links to EDS...and from there had my Doctor refer me to a

geneticist...

I found it kind of interesting/odd? that your doctor would mention EDS and

then give you antibiotics without pursuing the possibility...by having a

geneticist referral to (possibly) rule the diagnosis either in or out...

Why not ask him to?....

I have not worked in at least a decade and was self employed part time

before that ..and have had many similar problems ( in my 20's) with

kneecaps (especially)..and had surgery on my right knee at the age of

about 23 to stop it from dislocating....also wrists, back, shoulders

and my hip has gotten *much* worse in the past decade...

So I now have Fibromyalgia and Osteoarthritis as well...lots of joint

problems (dropping things, sudden sharp pains as well as the more

generalised achy type pains...)and tire easily...Ther have also been some

internal GERD and organ type problems along the way...

I hope you are able to get a clearer diagnosis from what you learn and

some knowledgeable support ...though I have read/learned what I can ..the

listserve members personal experiences as well as Jill's medical articles

(and her experience/knowledge) have been the " best " resource so far that I

have found.

Many have found various devices (splints, orthotics, types of shoes,

medications etc...which may be of benefit to you as well...just ask

Wishing you all the best...

Cheri Fidgeon

in , B.C.

p.s. if/when you are comfortable and wish to mention your area (where you

live) perhaps there is someone on the list who have found " experienced "

medical professionals nearby? (as well Jill may know, from her list...)

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