Re: Were you diagnosed with anything else prior to your EDS diagnosis?

[Guest guest]

My parents diagnosed me as " just a klutz " it wasn't till college I was

diagnosed and it seems that once I got to knowledgable Dr's they knew right

away what I had. Too bad it too 20 years!

Sue K

[Guest guest]

Well, we have a backwards one...my husband's mother was diagnosed with EDS at

18, and so when he and his brother were born with the same symptoms, they were

automatically diagnosed with EDS too.

Then our daughter was born, and at 3 showed symptoms, so we went to a

geneticist, who sent us to a connective tissue specialist. He rediagnosed the

family with Osteogenesis imperfecta type 1 instead (although a fellow geneticist

disagrees!)

I know at least 4 other families with the same experience.

There are a couple of reasons why I'm still on this list. One is that the

membership invited me to stay anyway (which I am eternally grateful for). the

other is that despite the change of diagnosis, our biggest problems are still

hypermotility, dislocations and joint pain.

OI type 1 and HEDS are usually caused by mutations of the same gene (Col1A1),

and so essentially they are of the same family group, and in fact are more

closely related than HEDS and VEDS. Acting on the advice of the other

geneticist, we describe our particular connective tissue disorder as 'a type 1

collagen disorder with features of HEDS and OI type 1'. its all semantics,

really, but it means that medical people look after our joints and our bones,

instead of just one or the other.

Love, Glenda

millgate@...

Were you diagnosed with anything else prior to your EDS

diagnosis?

Someone asked me recently if it was common to be diagnosed with something

else before a diagnosis of EDS is made. She had a long list of diagnoses

that were slowly eliminated after much time and the lack of complete

presentation for the disorders she was told she had - and now she wants to

know if she is alone in this or if there is anyone else out there who may

have been misdiagnosed prior to the revelation of EDS.

Thanks all!

Jill

[Guest guest]

I was diagnosed with a few things - just little though. Umm...my favourite

is " Multi-directional instibility sydrome " . There was weak bowel something

or another, and the definite " complainer " marked down on my file

Hope that helps

>

>Reply-To: ceda

>To: <ceda >

>Subject: Were you diagnosed with anything else prior to your EDS

>diagnosis?

>Date: Thu, 15 Mar 2001 17:28:59 -0500

>

>Someone asked me recently if it was common to be diagnosed with something

>else before a diagnosis of EDS is made. She had a long list of diagnoses

>that were slowly eliminated after much time and the lack of complete

>presentation for the disorders she was told she had - and now she wants to

>know if she is alone in this or if there is anyone else out there who may

>have been misdiagnosed prior to the revelation of EDS.

>

>Thanks all!

>

>Jill

>

>

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[Guest guest]

Jill,

Kate was diagnosed with Juvinile Ryhmatiod Arthritice (sp?) age 6-7,

Fibormyalgia age 9, EDS age 12? I think! Somewhere in there she was also Dx

with an overractive crazy over protected Mom but the test got a very

negative reation! Hee,Hee,Hee (*o*)

Jean

[Guest guest]

before being diagnosed, the doctors told my parents that i had hypermobile

joints and lax ligaments but this could not in any circumstances cause pain, so

i was a hypochondriac and needed lots of hard exercise and preferably a

psychiatrist to cure me.

gen

Were you diagnosed with anything else prior to your EDS

diagnosis?

Someone asked me recently if it was common to be diagnosed with something

else before a diagnosis of EDS is made. She had a long list of diagnoses

that were slowly eliminated after much time and the lack of complete

presentation for the disorders she was told she had - and now she wants to

know if she is alone in this or if there is anyone else out there who may

have been misdiagnosed prior to the revelation of EDS.

Thanks all!

Jill

[Guest guest]

I sure wish I had been...then maybe I wouldn't have to defend myself to drs,

nurses and now a new aty for my SS hearing which is May 3rd...finally after

waiting for a full year.. The other dropped me last Friday. It appears that

none of these want a patient or client that is informed

A greater part of me thinks I can represent myself...but everyone else says

that I would be better off with an aty....as I " can't speak right "

I am beginning to think these nightmares will never end....but it helps to

share with others that know.

I wanted my drs and aty to read the info I give them...but especially this

new aty isn't inclined to. I asked that he keep it over the weekend and we

would talk again on Mon.

Wed I started the terrible process of finding another aty. It appears these

aty's Chat with each other....2 called back today and told me that I had

already been turned down by 2 others. Geez

Katharine

[Guest guest]

Jill,

I was told from the time I was 12 that I had " bad

knees " and that if I worked harder in PT, I wouldn't

have the problems. I wasn't diagnosed until I'd had 17

unsuccessful knee surgeries and was 31 years old.

--- Bells wrote:

> Jill,

> Kate was diagnosed with Juvinile Ryhmatiod

> Arthritice (sp?) age 6-7,

> Fibormyalgia age 9, EDS age 12? I think! Somewhere

> in there she was also Dx

> with an overractive crazy over protected Mom but the

> test got a very

> negative reation! Hee,Hee,Hee (*o*)

> Jean

>

>

[Guest guest]

I was told that I had MS, fibrositis, was hypermobile, had paetella femoral

chrondra... something, arthirits " throughout " my whole body, having

arthritis related to IBD and probably somethings that I have long forgotten!!

I was lucky that no one accused me (at least to my face) of being some kind

of hypochondriac or worst!

It was a relief to find out what it really was but this relief came with a

sense of mourning that it was incurable and that I had passed it on to one of

precious kids.

I'm sure you all can relate that those feelings.

[Guest guest]

> I was diagnosed with the following in order of first to last -

> [...]Exagerrated Q angle of knees

What exactly is the Q angle?!

cheers

Rory