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Hey all,

hope you're all doing well today.

I saw my neuro yesterday and he said that the pooling issues that i have in my legs when i'm standing could be due to connective tissue disease.

do you guys with connective tissue issues, EDS, etc have a lot of pooling issues?

how were you tested for connective tissue disease?

my neuro wasnt sure if it was blood work that had to be performed or a biopsy and said it is generally a rheumy you have to see for this problem. he said they are still looking into MANY different causes for the pooling, but they havent investigated the connective tissue factor with me yet (and since my mom had aortic root aneurysm from what they think involves connective tissue and my dad has leg issues which they confirmed with biopsy is potentially connective tissue relate they are wondering if this could be an issue with me as well) ............??

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I have EDS and I have a lot of pooling problems. The Ehlers-Danlos National Foundation has a lot of good general info on how it is diagnosed and the different types. The website is www.ednf.org I hope that you get some answers. Dr. Grubb is the one who diagnosed me and then I also went for genetic testing. I see a rheumatologist for treatment of EDS. She has told me that she has seen an increase of EDS patients within the last year, but she wasn't sure if it's becoming more prevalent or if it is just getting diagnosed more due to increased awareness on physician's part. Good luck!

Jaime

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I had a geneticist diagnose me. Locally she coordinates eds care. The testing is really only for type 4. the other types are a clinical diagnosis. I also saw MArk Lavallee in Indiana, an eds specialist. he's actually in sports medicine. for eds, since it affects many systems, it often means different specialists. i see a local sports medicine doc for my joint issues. Many docs know little about it and only recognize extreme versions. I'mn not as hyperflexible as some, but my joints are all unstable, my skin somewhat hyperextensible, and slightly bluish eyes. ednf.org is a great resource. pots is a frequent topic there as well.

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BTW, the testing for type iv (the vascular kind) is through a skin punch biopsy. But it is one of the rarer types. Most people are classical or hypermobile--but still may have some vascular issues. Lavallee recommends periodic echocardiograms to check on the aorta, as it can dilate more easily in eds. they are now testing some versions of classical, but it's very preliminary. The main lab for this is in Washington state.

I did see a rheumatologist, but must say I didn't get much from it. I don't think he had much experience with it. I love my sports medicine doc. He trained with Lavallee and knows all about hypermobile joints and how to strengthen and protect them. And what I really need is info on managing specific joint injuries. There isn't really a drug that helps eds, other than pain meds, as needed., and any other symptomatic treatment. For people with vascular issues/fragility, it's important to keep bp down.

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I was dx'd with HEDS by one of my cardiologists using the Beighton Scale--basically a physical exam that tests for hypermobility in specific joints. Info is on the EDNF site.

Nina

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do you all have pooling in your legs or your abdomen? a doc told me that typically with connective tissue/hypermobile/EDS they see abdominal pooling with upright tilt and not so much leg pooling. ??

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