Spike and Buzz are at my feet, surly but manageable. Little Buzz a smaller cousin of Buzz that USUALLY resides in my hands but has been known to wander into my arms or farther, is clammering as usual to use more dictation and less keyboard. It’s still dark and that electric tingling in my life reminds me why this newsletter exists. I'm a rare-neuro patient who reads the journals, deep dives the latest neuro news so I see both sides of the exam table, and both sides of the needle.

So - to caregivers or anybody in the profession - the message I see is simple.

You're preparing to use AI. Your patients are preparing to fight it.

They're not telling you, but they're terrified AI will miss their zebra diagnosis, steal their data, or replace the human who actually listens. Three breakthrough AI tools hit peer-reviewed journals this year—tools that will make you faster and sharper. But if your patients don't trust the technology, none of it matters.

Think on that, then remember, “A dull knife is not only useless it’s down right dangerous.”

✅ The trust gap — What rare-disease patients fear about AI (and won't say)
✅ AI-EMG breakthrough — INSPIRE trial results, published August 2025
✅ 95% accurate ultrasound AI — NMD-AssistNet runs without internet
✅ Your phone as movement lab — OpenCap is free and ready NOW

⏱ Read time: 4 minutes

"Will AI miss me because I'm too rare?" They've survived years of misdiagnosis. They're terrified an algorithm trained on common conditions will skip their zebra.

"Who's seeing my data?" Rare-disease families are financially fragile. Every app feels like a risk for insurance denial or employer discrimination.

"Is this making you stop listening?" They already fight to be believed. AI feels like another barrier between them and a human who gets it.

The fix takes 30 seconds. Before using any AI tool, say this:

That's it. Trust rebuilt. Now let's talk tools.

A real RCT—200 patients, three physicians, randomized. Half got physician-only interpretation. Half got AI-generated preliminary reports combined with physician findings.

What the AI does: Queries EMG textbooks using retrieval-augmented generation, cross-references AANEM guidelines, pulls patient history from EHR. Generates a structured starting point.

Why it matters: EMG interpretation is operator-dependent. AI standardizes the baseline so subtle patterns don't slip through because someone was tired or rushed.

📚 VERIFY IT:

🎯 Timeline: Commercial AI-EMG tools at academic centers within 18-24 months.

A PA in Abilene runs muscle ultrasound, gets AI classification in under 2 minutes. No internet needed. Runs on portable devices.

The numbers: 95.02% accuracy. AUC of 0.9776. Distinguishes normal muscle from myopathy, neuropathy, and inflammatory patterns.

Texas angle: Patients who drive 200 miles for answers could get screening locally. Faster referrals. Less disability during diagnostic delays.

📚 DIG IN:

🎯 Watch for: Texas medical center pilots coming 2026.

Stanford proved smartphones beat stopwatches. Two cameras, nine movements, 130 participants. Published in NEJM AI.

The results:

Where this goes: Remote monitoring. Early flare detection. Your patients recording at home, AI flagging changes before appointments.

📚 GET IT:

🎯 Do this now: Download it. Try it on yourself. Know the interface before patients ask.

"I don't need AI to be perfect. I need my doctor to still look at me like I'm a person, not a data point. The day she stops doing that, I'm finding someone else—no matter how good the technology is."
— Diane, Fort Worth

What's working when you talk with patients about AI in their care? What questions are you hearing? I'd love to share what's helping across our community.

Email [email protected] — I read everything.

THE BOTTOM LINE: The best AI tools do two things at once: make care better AND make patients feel more supported. When you get both right, everybody wins.

What's working when you introduce AI to worried patients? What's bombing?

Please drop us a note.

Professional Resources:

Open-Source Tools:

Stay Current:

Texas NeuroRare (Tuesdays): CAR-T breakthroughs, trial access, insurance warfare—from someone in the same foxhole. TexasNeuroRare.org

RarelySerious (Fridays): "My Insurance Company's AI Denied My Claim. My AI Wrote My Appeal. Guess Who Won." RarelySerious.com

DISCLAIMER: Educational information for healthcare professionals. Always verify through your institution's protocols. And remember—patients are counting on an educated team to bring them along on this journey. That's not extra work. That's the heart of what a TEAM does.

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