Hello friends :) I'm happy to be here. I was diagnosed with HSD with a beighton of 4/9 and and systemic of 5, of which I was told I'm one point off of an EDS dx and am expected to receive it in the future. I have gastroparesis and orthostatic intolerance. Currently I am about to talk to a neurosurgeon about occult TCS and chiari and if you have experienced anything in the area I would love to hear as I feel very alone in the area entirely.I'm about to be 19, and have a love for animals especially marine life. I'm studying for my GEDs and if I can go to college I want to go for at least a degree in animal behavior and science.
Edema & Anasarca
damn you can get an hsd dx with 4/9? my physical therapist watched me do at least 4 but said it wasn't enough to be considered hypermobile (i think my rheum disagrees though lol - and the same pt also said joint pain doesnt exist). i also have orthostatic intolerance. not sure about gastroparesis, don't think so, but i have stopped eating as much/as often as i used to lately and often do feel sick after eating, have severe reflux and frequent cramping/bloating. the internet says "many people don't have noticeable symptoms" so who knows - how did you get your dx? i'm assuming your case must have been more severe.
i have also been having numbness in my hands and feet and extra dizziness lately, and those i'm going to address with a neurologist who i'm seeing for pots in a couple of months
nice to meet you! i hope you get to go to college, i think that sounds like a really cool degree
before seeing my geneticist who tested me for EDS and getting the second official HSD Dx, my rheumatologist did a physical exam where I was also hypermobile outside of beighton (this test is so outdated and the community hates it, HSD AND EDS together) including other joints, spine and even the arches of my feet collapse when I stand showing that my connective tissue is faulty.
For gastroparesis I definitely am a bit more severe, I constantly was having trouble with vomiting and never ate nearly as much growing up, it was painful after a few bites. I finally got a gastric emptying study done about a year ago that showed gastroparesis of liquids slowed down to about a two hour emptying time compared to what should be 30-60 minutes. I'm medicated now and do frequent snacking high calorie diet to keep my weight up :) your symptoms definitely sound GP-ish and if your struggling with them I would talk to a doctor about if it could be GP or if it could be something else, like I recently found I also have IBS. But usually they do a solid foods emptying study, at the time I had trouble keeping down foods without meds so I think they wanted to be safe with liquids.
And thank u the degree is pretty cool I could do lots with it and the thought makes me very happy :))))
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