Suspected VEDOSS? 25F with sudden red rashes, POTS/Gastroparesis symptoms, pericardial effusion, +PM/Scl antibodies after infection*
Hi everyone. I’m 25F and I’m really scared and in diagnostic limbo right now. I’m hoping someone here has a similar story.
Before this:_I was completely healthy 3 months ago, aside from anxiety I’ve had for years. No chronic illnesses.
How it started:
I got a bacterial abdominal infection 3 months ago and took antibiotics. Right after that, I started getting red spots/rashes all over my body. They don’t itch. They show up mostly on my forearms after I eat things like oranges, wheat, bread, etc. But they also come on with heat, cold, or even pressure from clothing and disappear very quickly without a trace. I also have very prominent dermatographism.
Then, 1 month after the infection, everything changed:
POTS + Gastroparesis symptoms started- I don’t have a confirmed diagnosis yet. I’m waiting for a tilt table test. I’m constantly bloated, feel full after a few bites, and have this feeling like water is coming back up into my throat. I have an appetite but I physically can’t eat.
Rapid weight loss: 16kg / ∼35lbs in 3 months- First because I was terrified of food due to the rashes. Now because of the gastroparesis-like symptoms.
Pericardial effusion- They found an 8mm effusion. No treatment was given and it’s now down to 3mm on its own.
Raynaud’s phenomenon? Immunologists say I have Raynaud’s, but I’m not sure if it’s that or just from POTS. It happens most when I stand for too long or I’m stressed. My fingers don’t hurt, they just turn purplish. My hands and feet also get cold even when it’s warm outside.
Joint pain + Hair loss- I’ve developed mild aching pain in my wrists and hands. And I’m noticing a lot more hair shedding than before.
Labs & Tests so far
Bloodwork is all normal. Detailed immunology panels are normal EXCEPT: I’m positive for anti-PM/Scl antibodies, and my eosinophil cationic protein is elevated.
My rheumatologist suspects VEDOSS but says it might not be that.
Nailfold capillaroscopy showed some dilated capillaries, local edema, and bleeding on one finger, but no typical scleroderma pattern.
I’m terrified. Does anyone have a similar experience? Starting with rashes + POTS + autoimmune markers after an infection? Or anyone diagnosed with VEDOSS or scleroderma who started like this?
Thank you for reading.