Kaylee Bays
Region: US
Tuesday 15 November 2022 22:34:13 GMT
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Shelby Alexis Slatte :
mine keeps asking me how long does it take to not be stiff in the morning.... im like were suppose to be stiff???
2022-11-15 23:59:08
4
Anna.Is.Eating.Good :
Sadly rheumatologists aren’t much help to those with EDS since it is not a rheumatic disease. Geneticists are the way to go!
2022-11-15 23:48:48
29
Johana Podric :
okay, actually same. they told me they would help get an answer and a formal diagnosis so I can stop being "highly suspected". told me it wasnt worth
2022-11-16 00:12:58
1
daywalkingredhead :
A competent rheumatologist is who coordinates care: PT/OT, sending for ortho, pain management, labs, etc. You are at higher risk for lots of things.
2022-11-16 02:07:01
1
EJ :
Specialist says you need a specialist. I’ve had that before too 😅
2022-11-15 23:24:33
12
Maddie :
I give her points for honesty - my rheumatologist just gaslit me about my diagnosis for 6 months 💅🏼
2022-11-16 00:03:31
9
The Amber Lady :
There's a lot of rheumatologist that feel overwhelmed and pass us on
2022-11-16 02:57:15
4
Zed | The Groovy Ferret :
that’s the worst part of a zebra disorder is finding someone who actually knows about it, my rheumatologist did extra research on it to help
2022-11-16 04:58:53
3
Ave :
Im so sorry :( my rheumatologist ran some tests and said that I was too young to be there and not to come back :/
2022-11-15 23:24:40
2
Turkey Dog Designs :
I’m trying to get in to a geneticist for an official V-EDS diagnosis and they just told me it will be multiple years before they can get me in 😬
2022-11-16 00:04:01
2
Rachel :
Best choice I’ve ever made is going to a university hospital for my connective tissue disease. Good luck!
2022-11-15 23:37:28
2
Lainie^^ :
went to a rheumatologist as a kid and they said i had eds but i’m so young so what’s the point in diagnosing me
2022-11-15 23:27:31
1
Tanushka :
We need a whole range of specialists depending on how we are individually affected — and hydrotherapy too!
2022-11-22 15:22:09
1
maddie🌞 :
My dentist told my mom that my jaw pain was freaky weird and unexplainable
2022-11-16 00:02:51
1
Sabrina :
There are no EDS specialists in the UC system in LA though 😢 as far as I can find
2022-11-15 23:10:06
1
sauerscrapbooking :
I have to drive 5 hours to be seen every 4 months cause my rheumatologist here said I needed a specialist 😂
2022-11-15 23:28:18
1
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