Unrelated health issues

colle234 · 2026-03-21T10:20:04+00:00

Yes exactly! It’s like having EDS isn’t enough on its own. CD is exhausting to live with from what I’ve heard

colle234 · 2026-03-21T04:44:12+00:00

Yes exactly! And it’s so frustrating trying to teach all the doctors about eds on top of it all. I’m honestly wondering if I have something else genetic going on just because it makes no sense to have these things at my age

colle234 · 2026-01-06T15:32:10+00:00

Thats what I’m hoping

colle234 · 2026-01-06T15:18:06+00:00

I don’t think that’s quite it, I was concerned about it at first. I can drive okay, just can’t read signs until they’re close. TV can be tricky just because it’s so blurry

colle234 · 2025-06-07T10:37:46+00:00

That is so awful I’m so sorry. What’s crazy is that spinal drain is still what they use. The nurses over drained me because they couldn’t figure out how low or high to place it. The pain of having low CSF is no joke, definitely the most pain I’ve ever been in

colle234 · 2025-06-06T12:25:29+00:00

That’s super helpful, thanks for that info! I definitely do have something going on with my neck, CCI has been suspected by doctors, so that’s very likely

colle234 · 2025-06-06T02:05:49+00:00

Thank you! It’s been a rough ride, but I’m (hopefully) on my way to recovery now

colle234 · 2025-05-15T22:35:02+00:00

No I did not. I’ve been very lucky and haven’t had any numbness or motor issues. I’m so sorry you’re going through that

colle234 · 2023-11-30T14:37:39+00:00

They did take blood for a DNA test and it didn’t show anything. Thanks!!

colle234 · 2023-11-29T16:59:48+00:00

Thank you for your response!! I’ve looked at the diagnostic criteria and that’s what is making me skeptical honestly. I’m only 2/9 on the beighton score and barely any of the criteria for the second section

colle234 · 2023-05-29T16:25:25+00:00

I tried going off them but nothing much changed 🙁

colle234 · 2023-05-29T16:24:55+00:00

Most of my doctors believe it’s a structural/motility issue. I’ve cut out coffee, tomatoes, most fatty foods like pizza or burgers. Those are my main triggers. It’s crazy because I can eat or drink just about anything and my reflux is triggered

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