Neuroacanthocytosis (NA) Community

Meet, discuss & support other patients or families living with Neuroacanthocytosis (NA). Contribute to topics, or just share what's on your mind

La mia malattia - Neuroacantocitosi

Ho 45 anni e un anno fa umi è stato diagnosticato una neuroacantocitosi atipica i miei sintomi attualmente sono debolezza, precario equilibrio, distonia facciale, spasmi muscolari.
La cosa più fastidiosa che ho e che mi mordo continuamente l'interno della guancia e le labbra. Per alleviare il dolore delle ferite sto usando un olio a base di un erba la melaleuca alternifolia ma vorrei riuscire a limitare questi morsi, qualcuno ci riesce. Sto usando anche un paradenti.

louise_d
moderator

Welcome to the community Massimiliano. Could you give us any more information about why your diagnosis is called atypical NA? Is it associated with one of the syndromes listed (ChAc, MLS, HDL-2 or PKAN)?
Thank you.

La mia malattia rientra nella corea

Hi, the mouth guard that you are using, is supposed to help you avoid biting yourself. Sometimes it should be larger than usual, to be helpful. I am an acupuncturist, working with a Maxillofacial surgeon, who fits the mouth guard according to need. We are situated in Jerusalem, at the Hadassah Medical Center. Try to find a similar setup in Italy. Acupuncture is very effective to keep down the tics and other troubles. Good luck. Jael.

Sono stato ad una nuova visita e mi hanno consigliato la DBS - Deep Brain Stimulation che ne pensate

Hi Massimiliano,
My husband also suffered the same symptoms of biting his tongue and the inside of his cheeks. He found some relief by using the type of mouth guard that boxers use. It is bulkier than other mouth guards and has an opening in the middle which he used to insert a straw through it to drink without having to take out his mouth guard.

Hope this information is helpful.

All the best, Loida