Adult-Onset Neuronal Ceroid Lipofuscinosis: CLN5 Variant Presenting as Focal Dystonia

Tremor Other Hyperkinet Mov (N Y). 2024 Nov 4:14:54. doi: 10.5334/tohm.941. eCollection 2024.

Abstract

Background: Neuronal ceroid lipofuscinosis (NCL) is a rare hereditary lysosomal storage disorder causing neuronal loss and progressive neurodegeneration. CLN variants cause varied phenotypic presentations.

Case report: A 49-year-old male presented with late adult-onset progressive focal right lower limb dystonia. Imaging showed cerebellar atrophy, and genetic testing was positive for the CLN5 variant (c.826T > C; p.Phe276 Leu) with uncertain significance. Skin biopsy suggested NCL, which made us consider the variant pathogenic, leading to novel phenotypic presentation.

Conclusion: Isolated focal dystonia has not been reported as an initial presentation in ANCL. Early genetic testing and periodic clinical assessments are advisable for better management and prognostication.

Keywords: Adult-onset Neuronal ceroid lipofuscinosis; CLN5 variant; Dystonia.

Publication types

  • Case Reports

MeSH terms

  • Dystonic Disorders / diagnosis
  • Dystonic Disorders / diagnostic imaging
  • Dystonic Disorders / genetics
  • Dystonic Disorders / physiopathology
  • Humans
  • Lysosomal Membrane Proteins / genetics
  • Male
  • Membrane Proteins / genetics
  • Middle Aged
  • Neuronal Ceroid-Lipofuscinoses* / diagnosis
  • Neuronal Ceroid-Lipofuscinoses* / diagnostic imaging
  • Neuronal Ceroid-Lipofuscinoses* / genetics
  • Neuronal Ceroid-Lipofuscinoses* / physiopathology

Substances

  • CLN5 protein, human
  • Lysosomal Membrane Proteins
  • Membrane Proteins