Re: Tongue Defect May Predict Connective Tissue Disorder

[Guest guest]

Hmmmmmmm. I don't have either, Ya think this will get Dr's to listen to me? I

wouldn't hold my breath!

Sue

[Guest guest]

Bonnie,

webtv wouldn't let me open the attachment. Could you email me a copy?

Thanks a hep.

Luv and hugs,

Ilene

You only have one life. Live it to the fullest.

[Guest guest]

Oh, just read the entire article again, got kicked off line before I finished

before. I also had pyloric stenosis when I was an infant. Have seen one

other with EDS who has had this and always wondered if it was somehow

related? Anyone else have this when they were an infant? Love, Sue Ginley

Here is the article: http://news.excite.com/news/r/010515/17/health-tongue

[Guest guest]

I have the one that connects my bottom lip to my gums.

But the one under my tongue is pretty small - have always been able

to touch my nose with my tongue. In fact, when my daughter was in

for diagnosis with the geneticist, one of the things he asked me was

if I could touch my nose with my tongue.

And tho this is not completely related, my top frenulum (top lip to

gum) was so overly large it caused not just a small spitter gap

between my teeth but room for a tooth there. When my front teeth

came out it it was surgically removed and my teeth are close together

& straight. But if I grin, you see mainly gums because my lip goes

up so high!

Joy

[Guest guest]

> I also had pyloric stenosis when I was an infant.

> Anyone else have this when they were an infant?

Not me.

-Barb

[Guest guest]

I also have both - diagnosed with Hypermobility Type.

[Guest guest]

Bonnie,I can not get the article,can you please email it to me??TY!!~Ruth~

brunickruth@...

>

>Reply-To: ceda

>To: <ceda >

>Subject: Re: Tongue Defect May Predict Connective Tissue Disorder

>Date: Sun, 20 May 2001 18:52:28 -0500

>

>

> Tongue Defect May Predict Connective Tissue Disorder

>

>Interesting, Barb. and I have both frenulums. What about the rest

>of

>you? If you can't get into the article, email me and let me know. I'll send

>you a copy of it.

>

>Bonnie

>

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[Guest guest]

The article disturbs me as it's yet another box for the doctors to put us in.

You

know the one, " well you don't bruise or scar easily so you don't have EDS " or

" well people with Vascular Type don't have dislocations " . Sometimes you feel

that

the doctors publish their findings early in order to gain publicity and further

funding.

Sue as for pyloric stenosis, I didn't have this as an infant but apparently I

vomited and passed blood and mucus for the first three weeks after I was born. I

was so weak that I was cot treated and wasn't allowed to leave the hospital for

a

month. When my parent adopted me they couldn't understand why I slept through

the

night right from day one or why I vomited up my milk etc. My mother constantly

told me I had a " woolworth's stomach " when I was growing up. Now of course I dry

retch and vomit in the mornings and am now on medication (as of three weeks ago)

to try and stop this. The upside is I never have to worry about dieting, I am so

skinny that if I turn sideways I completely disappear! Oh well at least there's

chocolate...

The joys of EDS.

Jen

>

[Guest guest]

Having read this article, it doesnt seem to me that 12 patients are enough to

base a study on, The researcher doesnt state whether any of these 12 are

related, either, so it may be less than 12 families.

Definitely worth following up...but I just cant believe that they would publish

with so few people in the sample!

Love Glenda