Symptoms & Diagnosis
What You’re Feeling Has a Name.
Schwannomatosis is rare, under-diagnosed, and frequently mistaken for other conditions. The symptoms on these pages come from real patients. They are documented. They are real. Select a section below.
Diagnosis
Diagnostic Criteria
Three clinical pathways, all subtypes from NF2-SWN to SWN-NEC, what your genetic results actually mean, and when a negative result is not final.
Read →Symptoms & Pain
Symptoms & Pain
The full range of schwannomatosis symptoms — every type of pain, motor and functional loss, fatigue, post-exertional crash, systemic effects, and the biology behind why they are so often dismissed.
Read →Tumor Types
Tumors & Gene-by-Gene
Every tumor type documented in schwannomatosis and a full side-by-side comparison of all eight subtypes — from primary tumors to dual diagnoses to penetrance and onset.
Read →Location
Symptoms by Location
What a lumbar schwannoma feels like versus a vestibular nerve tumor versus a peripheral limb nerve — and what each is most often misdiagnosed as before the correct answer is found.
Read →Imaging
Getting Your Imaging Right
How to tell a schwannoma from a cyst on ultrasound, which MRI sequences matter and why, when routine surveillance isn't enough, and exactly what to say at check-in.
Read →Next Steps
Does This Match?
If this pattern has been yours for years without a name — genetic testing, finding a specialist, surgical considerations, and what to ask your doctor.
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