Rare disease and red flags

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From the talk

If you remember one thing from this slide: call your doctor about any new symptom, or any old symptom that gets worse. AI is not the place for that. Sarcoidosis can show up in a new organ at any time, and a change is your body telling you something.

Full red flag list by organ

Sources: Mayo Clinic, National Jewish Health, Medscape

Brain and nerves: facial drooping or weakness, numbness or weakness in arms or legs, trouble speaking or swallowing, a new severe headache, seizures, balance problems.
Heart: chest pain, racing or skipping heartbeat, fainting, dizziness or lightheadedness, new swelling in the legs.
Eyes: sudden vision changes, a painful red eye, new floaters, light sensitivity, blurred vision. Eye inflammation can be silent, so keep your yearly eye exam even when you feel fine.
Lungs: breathing that is getting worse, coughing up blood.
Kidneys and calcium: extreme thirst, confusion, kidney stone pain, blood in the urine, swelling around the eyes.
Liver: yellowing of the skin or eyes.
Whole body: fever while on immune lowering medicine, unexplained weight loss, night sweats.

Read the slide as text

YOUR QUESTIONS · RARE DISEASE AND RED FLAGS
Sarcoidosis is rare and different for everyone. How well does AI handle it?
When should I call my doctor instead of asking AI?
Chest pain, a racing or skipping heartbeat, fainting
Facial drooping, numbness or new weakness
Sudden vision changes or a painful red eye
Breathing that is getting worse, coughing up blood
Fever while on immune lowering medicine
Extreme thirst, confusion or kidney stone pain
Less well than common conditions like diabetes
Much less has been written about it, especially heart or nerve sarcoidosis
So introduce yourself, ask for sources, and lean on your sarcoidosis specialist
Call your doctor about any new symptom, or an old symptom that gets worse.
Don’t type it. Call. In an emergency, call 911.

Audience questions

You asked

Since sarcoidosis is rare and looks different in every patient, how well does AI handle it compared to more common conditions?

Honestly, less well than common conditions like diabetes. AI learns from what has been written, and much less has been written about sarcoidosis, especially less common types like cardiac or neurosarcoidosis. That is exactly why your introduction matters, why you should ask for sources, and why a sarcoidosis specialist is still your most important resource.

You asked

What are the biggest red flags that mean I should stop and call my doctor instead of asking AI?

Never use AI for anything that feels urgent. Call your doctor, or 911 in an emergency, for chest pain, a racing or skipping heartbeat, or fainting, because sarcoidosis can affect the heart. Call for sudden vision changes or a painful red eye, because it can affect the eyes. Call for breathing that is getting worse or coughing up blood. Call for a fever if you take medicines that lower your immune system, like prednisone or methotrexate. And call for extreme thirst, confusion, or kidney stone pain, which can be signs of high calcium. If it feels urgent, call, don’t type.

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