Re: can I join this group?

November 28, 2003

In a message dated 11/28/2003 7:16:28 PM Pacific Standard Time,

monica-jb@... writes:

so she sent me

to a rheumatologist who said I don't have EDS because I don't have

fragile skin.

Yep!

We have all heard that in one way or another!

With all your other symptoms.... I am not going to diagnosis ... just to say.

Welcome!

You will find wonderful people who have gained quite a bit of knowledge and

are as supportive as they come.

Welcome again...

I am Debbi, same symptoms as you, 45 and recently diagnosed too. I think you

will find great comfort and information here.

Debbi

Southern California

Orange County

and Mommy to Bobbi-Gray

November 28, 2003

You seem to be going through the smae thing that I am most people on

here have gone through. Firstly you need to be tested to rule out

things like lupus and other autoimmune disorders (as the dry eyes and

raynauds can indicate things like Sjogrens or MCTD (Mixed Connective

Tissue Disease), I have a HORRIBLE family history of these things

myself and am in the process of haveing diagnostic tests and things

to rule out or diagnose which auto-immune disease I have.

As to the EDS you need to see a Geneticist (who knows about ALL forms

of EDS, and try to find a rheumy who knows about EDS (I ring them and

ask or email them)), the " you can't have EDS becuase you don't have

fragile skin " is VERY common, I was told that I " can't have EDS

because my skin wasn't stretchy enough " , I was told that I have

a " genetic hereditary connective tissue collagen hypermobity

disorder " but my GP diagnosed me with H-EDS/ EDS-3 the Hypermobile

form where the skin isn't as affected in most people with a possible

crossover with the periodontal form and even a bit of the classic

form as well. I still need to have the biopsy test to rule V-EDS (The

Vascular form) but am unsure if it is available here in Austrlia.

Where are you from as maybe someone here is from close by or knows of

EDS knowlegable doctors in oyur area who may be able to diagnose you

and your kids.

Nice to meet you (My name is Sharon and I am 32 yrs old and have HEDS

(or so we think) along with other medical problems as yet mostly

undiagnosed).

Sharon

> I have been looking for an answer to my and my childrens helath

> problems for years, and I just learned about EDS a month ago. I am

> convinced that this must be our answer.

>

> I have had chronic joint, back and neck pain for 10 years, which

has

> gotten worse over that time. It is so bad now that I can't do

> anything anymore. I'm 41 years old, and I can't even vacuum

without

> having to lay down half way through.

> I have been diagnosed with begnine hypermobility syndrome, chronic

> pain syndrome, and chronic fatigue syndrome and raynaud's

syndrome.

> I get cramps in my feet and hands. I have what feels like a lump

in

> my throat. I had an hysterectomy in may this year for a prolapse

> uteris. I can't get numb at the dentist without taking a large

dose

> of xanax and the dentist uses an out of the ordinary pain killer.

>

> My oldest daughter, who is now 17, had 3 spontaneous pneumothoraxes

> this year, resulting in surgery to repair and remove part of her

> lung. She has re-curring urinary tract infections which she is

> going in for tests in a couple weeks for. She has on and off pain

> in her knees and ankles. She is hypermobile, and has raynaud's.

> She has had horrible experiences at the dentist, can't easily get

> numb. The epidural they put in during her lung surgery didn't

> work. It took them 3 days to finally get her pain under control -

> putting her on a constant morhine drip, along with the button to

> push.

>

> My middle daughter (15) has chronic knee, calf and ankle pain. All

> the test show nothing. She has suffered severe back spasms lately,

> and has stopped all sports because of the pain. She was in

> everything up until 2 years ago. She is hypermoble - even more so

> than me, and she has raynaud's. She complains often of dry eyes.

>

> My son (13) has on and off knee, calf and ankle pain, usually after

> excercise. He is also hypermobile.

>

> All of us can stretch our skin just like the pictures on the web.

> We all bruise fairly easily.

>

> I have been to so many doctor over the last 5 years, and they all

> say the same thing. I'm hypermobile, and I have to strengthen my

> muscles, or they want me to see a psyciatrist.

>

> I was in the Marine Corps for 4 1/2 years. I used to work out just

> about every day.

> I used to do a lot of gardening. Planting gardens for many

people.

> We had horses up until 2 years ago.

> I used to play the flute and guitar, which I had to quit because of

> pain.

> So, I've always led an active, hard-working life.

> Now, I'm reduced to terrible pain every single day. I am so tired

> all of the time, I have to take naps every day. I can't drive for

> more than 10 minutes without pain.

>

> I need help in finding out what is going on. My doctor is

> wonderful, and says she doesn't know much about EDS, so she sent me

> to a rheumatologist who said I don't have EDS because I don't have

> fragile skin.

>

> I am not ready to give up on this.

>

> Any help???

November 28, 2003

can I join this group?

I have been looking for an answer to my and my childrens helath

problems for years, and I just learned about EDS a month ago. I am

convinced that this must be our answer.

I need help in finding out what is going on. My doctor is

wonderful, and says she doesn't know much about EDS, so she sent me

to a rheumatologist who said I don't have EDS because I don't have

fragile skin.

I am not ready to give up on this.

Any help???

~~~~~~~~~~

-

whoops! Sharon in Aussie land beat me too it...but here's my response!

Welcome to CEDA and the " family " ....sounds like you found the right place!

Fragile skin is NOT the only criteria to have EDS!!! A lot of MD's don't

understand about EDS and the other systems it affects! The best person to

give you a definite diagnosis is a geneticist. Where do you live? Jill,

the list owner, has names of good MD's in a lot of places (USA and Canada,

plus other countries).

If you sign on to yahoogroups.com, go to ceda, then go to archives. You can

search under the archives for certain topics, if you want. Don't be afraid

to ask questions! And if you don't get an answer right away...post it

again as sometimes messages get lost in cyberspace!

Have you read thru the websites on EDS?

www.ceda.ca

www.edstoday.org

www.ehlers-danlos.org

are good ones to start with.

There are several nurses on the list who are very knowledgeable too!

Welcome to the family

Bonnie Heintskill, age 48, EDS Variant

age 15, EDS Variant

Suburb of Milwaukee WI

November 28, 2003

,

Welcome to our " family " .

We'll do what we can to help you out with answers, and/or letting you know

you're not alone in what you experience.

First off I want to let you know that fragile skin is not necessary in order to

have EDS. I don't have particularly fragile skin.

If your rheumatologist saw me, I too would not have EDS if fragility was THE

criteria needed to have it.

One of my dermatologist said that's the ONLY thing they were taught about EDS in

med school !

Lots of us have been to lots of doctors before finding out what's going on with

all the " strange " things we have going on. Plus I think there's an over

abundance of us who have had suggested to us we see a psychiatrist....only

because our observable physical problems didn't make sense to the doctor...in

otherwords they didn't know what they were looking at, so tell the patient

they have problems.

Obviously there are times we need to talk to someone because of what we go

through living with EDS.

Have you seen a genetic doctor? Many of us have finally been diagnosed by doing

that.

I was diagnosed back in " 79 at 29 y/o. One of our three children have it, and

her little girl has it. My dad, and=d possibly my mother, and my dad's

mother had it. My sister has it too, and she thinks her daughter has it.

Again, welcome to the group!!

Blessings,

From: Byrnes

I have been looking for an answer to my and my childrens helath problems for

years, and I just learned about EDS a month ago. I am convinced that this must

be our answer.

November 28, 2003

>

> I need help in finding out what is going on. My doctor is

> wonderful, and says she doesn't know much about EDS, so she sent me

> to a rheumatologist who said I don't have EDS because I don't have

> fragile skin.

>

> I am not ready to give up on this.

>

> Any help???

Boy did you come to the right place! You could be talking about me --

except that I am 39!

I hope you'll stick around and get to know people on the list. You

sound like the rest of us!

Joy Sedgley

ville, FL

November 29, 2003

Hi --

Welcome to the group! I think going to a geneticist might help with alot of the

questions that you have. Just keep going until you find one who does listen to

you (I had to try two before I found one). We are all here for you, as everyone

else has already said. We will do everything we can to help as we have all been

in that place at one time or another.

Take care, all the best,

Patti

can I join this group?

I have been looking for an answer to my and my childrens helath

problems for years, and I just learned about EDS a month ago. I am

convinced that this must be our answer.

I have had chronic joint, back and neck pain for 10 years, which has

gotten worse over that time. It is so bad now that I can't do

anything anymore. I'm 41 years old, and I can't even vacuum without

having to lay down half way through.

I have been diagnosed with begnine hypermobility syndrome, chronic

pain syndrome, and chronic fatigue syndrome and raynaud's syndrome.

I get cramps in my feet and hands. I have what feels like a lump in

my throat. I had an hysterectomy in may this year for a prolapse

uteris. I can't get numb at the dentist without taking a large dose

of xanax and the dentist uses an out of the ordinary pain killer.

My oldest daughter, who is now 17, had 3 spontaneous pneumothoraxes

this year, resulting in surgery to repair and remove part of her

lung. She has re-curring urinary tract infections which she is

going in for tests in a couple weeks for. She has on and off pain

in her knees and ankles. She is hypermobile, and has raynaud's.

She has had horrible experiences at the dentist, can't easily get

numb. The epidural they put in during her lung surgery didn't

work. It took them 3 days to finally get her pain under control -

putting her on a constant morhine drip, along with the button to

push.

My middle daughter (15) has chronic knee, calf and ankle pain. All

the test show nothing. She has suffered severe back spasms lately,

and has stopped all sports because of the pain. She was in

everything up until 2 years ago. She is hypermoble - even more so

than me, and she has raynaud's. She complains often of dry eyes.

My son (13) has on and off knee, calf and ankle pain, usually after

excercise. He is also hypermobile.

All of us can stretch our skin just like the pictures on the web.

We all bruise fairly easily.

I have been to so many doctor over the last 5 years, and they all

say the same thing. I'm hypermobile, and I have to strengthen my

muscles, or they want me to see a psyciatrist.

I was in the Marine Corps for 4 1/2 years. I used to work out just

about every day.

I used to do a lot of gardening. Planting gardens for many people.

We had horses up until 2 years ago.

I used to play the flute and guitar, which I had to quit because of

pain.

So, I've always led an active, hard-working life.

Now, I'm reduced to terrible pain every single day. I am so tired

all of the time, I have to take naps every day. I can't drive for

more than 10 minutes without pain.

I need help in finding out what is going on. My doctor is

wonderful, and says she doesn't know much about EDS, so she sent me

to a rheumatologist who said I don't have EDS because I don't have

fragile skin.

I am not ready to give up on this.

Any help???

November 29, 2003

,

Welcome!

I am glad that you have joined our family and hope that you enjoy the

support and love from your new brothers and sisters here. Your experiences

are fairly typical for so many of us here, and I just know that you will

find many answers to your questions!

I have some articles for you that I will forward to you now, I hope these

help as well.

Jill

November 29, 2003

Welcome to the ceda list, monica.

Unlike the rest of the world, here you will find someone going through the

same things you are.

As others have mentioned, having a genetic study in hand will move things on

a bit smoother with some doctors. Although I hardly have an easy time with

my doctors; I find it best not to overwhelm them with too much information.

I have a single sheet with all the medical info on it for each of us (mine,

and my two HEDS daughters). The docs really appreciate that. I also only

take in the new nosology and *only* the EDS related information for the

doctor that I will be seeing. For instance I *only* take in the 'anesthesia

sometimes doesn¹t work' article, the tmj articles, the dental manifestations

articles to the dentist. I don¹t take them the spinal deformity articles,

the joint pain, the headache articles etc. Official EDS logo on the articles

help a great deal; as doctors rarely read the articles pasted off the

internet without it. When I scan and copy articles out of official

publications I blank out the spots in which clip art have been pasted or the

beginning of an another article begins. I also take in *only* the x-rays

and doctor reports that address the medical issue that I am coming in for.

In this way I can sometimes keep the doctor on track.

The major problem I often hit is that doctors wont know how to help me with

something; but will send me somewhere else for something that I didn¹t walk

in the door trying to seek help for. I am rarely able to get a conclusion

to the medical problem I am able to seek help for.

Does anyone have a good technique for this?

On 11/29/03 6:02 AM, " ceda " <ceda > wrote:

>

> Subject: can I join this group?

>

> I have been looking for an answer to my and my childrens helath

> problems for years, and I just learned about EDS a month ago. I am

> convinced that this must be our answer.

>

> I have had chronic joint, back and neck pain for 10 years, which has

> gotten worse over that time. It is so bad now that I can't do

> anything anymore. I'm 41 years old, and I can't even vacuum without

> having to lay down half way through.

> I have been diagnosed with begnine hypermobility syndrome, chronic

> pain syndrome, and chronic fatigue syndrome and raynaud's syndrome.

> I get cramps in my feet and hands. I have what feels like a lump in

> my throat. I had an hysterectomy in may this year for a prolapse

> uteris. I can't get numb at the dentist without taking a large dose