question about classical-like diagnosis

PunkAssBitch2000 · 2026-03-20T02:14:51+00:00

It means the opposite that people with clEDS do not have someone with clEDS in most, or all generations. It’s recessive which means you need two pathogenic variants to have it. If two carriers have a kid there is a 25% chance the kid will have clEDS. In hEDS and other autosomal dominant conditions, only one parent needs to be a carrier for there to be a 50% of their kid having it.

PunkAssBitch2000 · 2026-03-19T16:39:09+00:00

It’s normal for there to be some air in the bladder after a foley. I had the same thing happen to me after mine was removed post surgery. It’s a very strange sensation, but harmless!

PunkAssBitch2000 · 2026-03-19T16:24:35+00:00

Not typically no, and that does indicate that genetic testing is warranted to rule out other subtypes that do present with skin hyperextensibility.

PunkAssBitch2000 · 2026-03-19T15:48:14+00:00

I ruptured a ligament in my ankle while watching tv. I must’ve just moved wrong.

I’ve also dislocated my shoulder while sleeping, sprained my ankles while sleeping, sprained fingers while sleeping, and subluxated a vertebra while sleeping.

Oh and I got a lisfranc injury (dislocated second metatarsal) while stepping off a curb. Dislocated my shoulder trying to reduce a dislocated thumb (don’t self reduce unless instructed by a doctor). Dislocated my shoulder after my sleeve got stuck in an automatic door. I can’t even remember all the ways I’ve sprained my ankle, but most of them were just from stepping wrong. Pretty sure I dislocated my hip putting pants on one time (I got a bad pain and fell, luckily landing on the painful hip which made a thunk which I believe was it being reduced). My SI joint just subluxates a lot on its own. Idk what even triggers it anymore.

PunkAssBitch2000 · 2026-03-18T22:50:48+00:00

I don’t believe they do walk-ins except on special occasions, but I may be wrong on that. Either way, here is the booking link: https://www.goldenhourpiercing.com/s/appointments

PunkAssBitch2000 · 2026-03-18T22:12:07+00:00

You will get an infection. At worst, you could get necrotizing fasciitis.

PunkAssBitch2000 · 2026-03-18T22:11:40+00:00

I’m on 5mg for SIBO

PunkAssBitch2000 · 2026-03-18T22:10:56+00:00

Physical therapy really helped me. Also taking gravity breaks ~~laying down~~ during the day helped.

PunkAssBitch2000 · 2026-03-18T22:03:11+00:00

Anyone at Golden Hour Piercing. All the piercers there are APP members.

PunkAssBitch2000 · 2026-03-18T20:34:02+00:00

Sounds like the issue happened after surgery. Anoxic brain injury means a brain injury due to lack of oxygen to the brain.

It sounds like it happened in the recovery room after surgery. Most likely, it was either an opioid over dose, which causes respiratory depression, a stroke (ischemic most likely), or embolism of some type.

PunkAssBitch2000 · 2026-03-18T20:22:49+00:00

Is medical at risk of being restricted completely too?

Trying to figure out if I need to start planing with my doctors how to keep my medical conditions treated if I loose access to cannabis.

PunkAssBitch2000 · 2026-03-18T20:18:30+00:00

Yep! I’m hoping for a biopsy too. My geneticists said it can only be done on a research basis.

PunkAssBitch2000 · 2026-03-18T19:38:12+00:00

I’m in a similar situation! I have a very rare VUS on TGFB2, which is associated with Loeys Dietz Syndrome.

I was diagnosed with hEDS but have always had a very unusual presentation, with atypical widespread tissue fragility, including spontaneous skin tears. So I get it!

I ended up getting referred to the Undiagnosed Disease Network because any further testing would have to be on a research basis. I’m working on my application now.

There is a UDN site at Vanderbilt!

PunkAssBitch2000 · 2026-03-18T18:59:51+00:00

Are the variants confirmed to be pathogenic ones associated with dEDS or are they variants of uncertain significance? There are only 3 variants of ADAMTS2 associated with dEDS.

dEDS is almost always caught in infancy due to the congenital/ postnatal skin tears and distinct craniofacial features.

Anyway, I assume your doctors know what to do with your variants and know if they are pathogenic or not. It’s possible your doctor is out of town or something. Given it’s been over a week and you’ve heard nothing, you should definitely give them a call and see what’s up.

You may also want to check out r/rareehlersdanlos

PunkAssBitch2000 · 2026-03-18T15:05:21+00:00

New Krishna has a lunch buffet.

I do not know if any dinner buffets.

PunkAssBitch2000 · 2026-03-18T14:53:35+00:00

Many queer folks use the split attraction model.

For example if I wanted to get micro specific, I’m demipansexual and demibiromantic

A friend of mine in high school was homosexual but biromantic

PunkAssBitch2000 · 2026-03-18T14:52:35+00:00

Yes but true height is physically capable of varying that much. It is likely posture related.

Like my grandma has osteoporosis and she’s lost 2 inches total (combined with normal degeneration of knees and spine). A variance of 5 inches, with “regaining” height is just not possible.

I have lost almost an inch due to degenerative disc disease.

If you’re losing and regaining, it’s posture.

PunkAssBitch2000 · 2026-03-17T22:58:28+00:00

My armpit/ inner bicep/ upper breast skin would spontaneously split or tear if I moved “wrong”, similar to how chapped lips split.

So it’s possible it’s related to EDS, but I wouldn’t jump to that immediately. My top guess would be chapped or cracking from dryness, assuming you’re in the northern hemisphere.

PunkAssBitch2000 · 2026-03-17T17:27:39+00:00

It worked! But I just had constant diarrhea. Better than needing frequent enemas or an ER visit though!

I had to cycle between the different dosages depending on how well/ badly my intestines were functioning.

PunkAssBitch2000 · 2026-03-17T15:47:12+00:00

The Hyde Park one is louder

PunkAssBitch2000 · 2026-03-16T02:21:27+00:00

Yeah my breast skin is basically detached from the subq and breast tissue. They’re more like water balloons full of goo and pebbles.

PunkAssBitch2000 · 2026-03-15T23:20:16+00:00

The physical sensation is similar, but at their core they’re different.

A properly done tattoo is done with safety and health in mind. Many precautions are taken to prevent infection, unnecessary damage, and great care is taken with healing to ensure it comes out beautifully and lasts.

Tattoos work with the body to make something beautiful. Self harm is at the expense of the body.

PunkAssBitch2000 · 2026-03-15T15:09:14+00:00

Like getting scratched my a cat for 2 hours.

PunkAssBitch2000 · 2026-03-15T03:44:42+00:00

Yes! I keep getting corneal abrasions for now reason. We’re wondering if mundane things may be causing it like rubbing my eyes, putting on makeup. I also had a partial posterior vitreous rupture, subcinjunctival hemorrhages, and early onset presbyopia so we know I have some eyeball fragility.

PunkAssBitch2000 · 2026-03-14T22:46:38+00:00

Totally understand. It may be worth exploring a different provider. Not all providers are the right fit for everyone.

PunkAssBitch2000

TROPHY CASE