Overview
Tremor-nystagmus-duodenal ulcer syndrome is an extremely rare condition that combines three main features: tremor (involuntary shaking movements), nystagmus (rapid, uncontrolled eye movements), and duodenal ulcers (sores in the first part of the small intestine). This syndrome was described in a small number of families, and very little is known about its underlying cause or how common it truly is. The tremor in this condition typically affects the hands and can interfere with fine motor tasks such as writing or eating. Nystagmus causes the eyes to move back and forth involuntarily, which can lead to blurred vision, difficulty focusing, and problems with balance. The duodenal ulcers can cause stomach pain, nausea, and in some cases bleeding in the digestive tract. The combination of these neurological and gastrointestinal symptoms in the same individual or family is what defines this syndrome. Because this condition is so rare, there is no specific cure or targeted treatment. Management focuses on treating each symptom individually. Tremor may be managed with medications commonly used for movement disorders, nystagmus may be addressed with optical aids or certain medications, and duodenal ulcers are typically treated with acid-reducing drugs such as proton pump inhibitors. Patients benefit from a team of specialists working together to address the different aspects of this syndrome.
Also known as:
Key symptoms:
Involuntary shaking or tremor, especially in the handsRapid uncontrolled eye movements (nystagmus)Stomach or upper abdominal pain from duodenal ulcersBlurred or unstable visionDifficulty with fine motor tasks like writingNausea or vomitingHeartburn or acid refluxBalance problems or unsteadinessDifficulty focusing the eyesDark or bloody stools from ulcer bleeding
Clinical phenotype terms (4)— hover any for plain English
Autosomal dominant
Passed on from just one parent; each child has about a 50% chance of inheriting it
Variable
Can begin at different ages, from infancy through adulthood
Treatments
No FDA-approved treatments are currently listed for Tremor-nystagmus-duodenal ulcer syndrome.
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Specialists
View all specialists →No specialists are currently listed for Tremor-nystagmus-duodenal ulcer syndrome.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Tremor-nystagmus-duodenal ulcer syndrome.
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Caregiver Resources
NORD Caregiver Resources
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Mental Health Support
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Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.What is the likely cause of this combination of symptoms in my case or family?,Should we pursue genetic testing, and what might it reveal?,What medications are best for managing my tremor without worsening my ulcers?,How often should I have endoscopies to monitor my duodenal ulcers?,Are there any medications or foods I should avoid?,Is there a risk that my children could inherit this condition?,Can you refer me to specialists who have experience with rare multi-system syndromes?
Common questions about Tremor-nystagmus-duodenal ulcer syndrome
What is Tremor-nystagmus-duodenal ulcer syndrome?
Tremor-nystagmus-duodenal ulcer syndrome is an extremely rare condition that combines three main features: tremor (involuntary shaking movements), nystagmus (rapid, uncontrolled eye movements), and duodenal ulcers (sores in the first part of the small intestine). This syndrome was described in a small number of families, and very little is known about its underlying cause or how common it truly is. The tremor in this condition typically affects the hands and can interfere with fine motor tasks such as writing or eating. Nystagmus causes the eyes to move back and forth involuntarily, which can
How is Tremor-nystagmus-duodenal ulcer syndrome inherited?
Tremor-nystagmus-duodenal ulcer syndrome follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.