CADASIL Toolkit · Diagnosis Prep
Diagnosis Prep Pack
A doctor-ready packet you can bring to your appointment.
Before You Go
You don't need the perfect words. Messy notes are still useful.
- ☐ Write down your top 3 concerns
- ☐ Note any family history of strokes, migraines, or early dementia
- ☐ List current symptoms and when they started
- ☐ Bring a list of current medications
- ☐ Consider bringing someone with you for support
- ☐ Ask your doctor's office about genetic testing options beforehand
Questions to Ask Your Doctor
About Diagnosis:
- • Could my symptoms be caused by CADASIL?
- • What tests would confirm or rule out CADASIL?
- • How long does genetic testing take, and is it covered by insurance?
- • If it's not CADASIL, what else could explain these symptoms?
About Monitoring:
- • What symptoms should I track?
- • How often should I have MRIs or other scans?
- • What warning signs should I watch for?
About Treatment:
- • What treatment options are available?
- • Are there medications that can help with my symptoms?
- • What lifestyle changes might help?
- • Should I avoid certain medications (like some migraine treatments)?
About Family & Genetics:
- • Should my family members get tested?
- • How do I talk to my kids about this?
- • What are the implications for future planning?
What to Tell Your Doctor
Fill these in before your appointment:
I've noticed:
This has impacted:
In my family, we've seen:
My biggest concern is:
You are allowed to bring someone with you.
If you feel dismissed, you are allowed to seek a second opinion.
This is not medical advice. Always consult your healthcare provider.