🌵 Editor's Note
Your neurologist just told you they're using AI.
You smiled and nodded. You have no idea what that means.
This newsletter exists because AI is already in your rare disease care—and maybe nobody's explaining or if they do you just don’t understand.
AI is a tool that we need badly in our fight, only a tool. So learn to use correctly. Try using a hammer without training. How about a chainsaw? Get educated and get better, what is so hard?
Whether you are a patient or trying to make your patients BETTER you need AI.
Welcome to Neuro AI Ally.
📋 What You'll Learn (4 Minutes)
✅ Where AI is already in your care
✅ The 3 questions that matter most
✅ What AI can't see about rare disease
✅ Your pre-appointment checklist
🤖 YOU'RE ALREADY USING AI
Here's where:
• Clinic scheduling – AI optimizes doctor calendars
• Doctor's notes – AI scribes generate documentation
• Imaging reads – AI flags patterns before radiologists review
• Lab results – AI compares your numbers against millions
• Insurance approvals – AI decides coverage
Most families find out by accident.
❓ THE 3 QUESTIONS THAT ACTUALLY MATTER
#1: Can AI See My Rare Disease?
Short answer: Probably not as well as your neurologist.
Medical AI trains on common cases. For CIDP, MOGAD, NMOSD—AI hasn't seen enough examples to spot YOUR patterns.
Real impact:
Lab abnormalities your doctor catches get flagged "normal" by AI
Subtle symptoms (gait changes, word-finding delays) need human eyes
Your Tuesday afternoon weakness pattern? AI doesn't know your timeline
What you do:
Ask: "Is this AI validated for my specific diagnosis?"
Speak YOUR patterns: "My weakness worsens Tuesdays after stress"
Join disease registries—you're training better AI for the next patient
#2: Will AI Make My Doctor Less Human?
The split: Poor AI = doctor divided between listening to you, verifying AI, explaining output. Visits feel rushed.
The promise: Good AI = less paperwork, more listening. Yale 2025 study: AI scribes reduced physician burnout 74%, improved patient communication 84%.
What determines the difference:
🚩 Red flags:
Doctor stares at screen while you talk
"The AI says..." without clinical judgment
You leave feeling unheard
✅ Green lights:
Doctor makes eye contact first, checks AI second
"AI suggested this, but I disagree because..."
Space to say "something's not right" even if labs look normal
What you do:
Write symptoms down BEFORE appointment
Speak first, data second
Ask: "Did you look at the AI suggestion, and do you agree?"
Bring caregiver—two sets of ears catch more
#3: Does AI Change What I'm Supposed to Do?
The truth: Your role gets MORE important, not less.
AI handles paperwork and pattern-spotting. It cannot:
Notice your person's smile is smaller today
Remember they wore red socks every day and didn't today
Sit with someone who's scared
Catch tiny changes that don't fit textbooks
Rare disease specialists say their best diagnostic insights now come from caregiver notes—families documenting patterns AI would never see.
What you do:
Keep notebook of changes—don't filter, just write
Bring patterns: "Every Tuesday she gets weaker. Here's my chart."
Ask: "Will this AI work better with my observations?" Usually yes
Don't assume the tool knows better than you do
🎯 YOUR PRE-APPOINTMENT CHECKLIST
Print this. Bring it.
Ask these 4 questions:
□ "Are you using AI tools in my care? Where?"
□ "Was this tool tested on people like me?"
□ "What could this AI miss?"
□ "How do I opt out if uncomfortable?"
Watch for red flags:
AI contradicts what you're seeing
New tool, zero explanation
Data use you didn't consent to
Doctor confused about AI output
Watch for green lights:
Plain-language explanations
Tool saves you actual time
Your observations valued alongside AI
Doctor willing to override AI when needed
📖 QUICK GLOSSARY
Algorithmic Bias: AI making unfair guesses because it learned mostly from one type of person
Black Box AI: System gives answer but can't explain why
Confidence Score: How sure AI is ("78% confident this is CIDP" = not 100%, verify)
💡 WHY THIS MATTERS NOW
A 2025 study found medical AI makes 23% more errors in rare disease diagnosis compared to common conditions. Not because AI is bad—because it hasn't learned from enough rare cases.
You are the data AI needs to get better. But only if:
You speak up about what AI misses
You document patterns AI can't see
You demand explanations in plain English
You participate in registries
This isn't about being anti-AI. It's about being pro-accuracy.
🌵 THE BOTTOM LINE
AI is already in your rare neuro care. You can either:
A. Smile and nod while decisions get made you don't understand
OR
B. Ask 4 questions, document patterns, demand explanations
We're betting on B.
🌵 THE NEURO AI ALLY FAMILY
Texas NeuroRare – Texas rare neuro resources and community
Rarely Serious – Humor in rare disease (you need laughs)
Neuro AI Ally – Where AI meets honest answers
⚠️ DISCLAIMER
Educational information only. Not medical advice.
Always consult your healthcare provider before making treatment decisions or using/stopping AI tools in your care.
Information sourced from peer-reviewed research, clinical literature, NORD, GBS/CIDP Foundation (December 2025).
Privacy: We collect only email and voluntary feedback. No selling, sharing, or AI training without consent.
Spotted an error? Tell us—feedback keeps us honest.
© 2025 NeuroAIAlly | Caregiver-to-caregiver transparency
📧 [email protected] | texasneurorare.org
