Justo's thread

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JUSTO CB

New member
Joined
Oct 8, 2017
Messages
1
Reason
Loved one DX
Diagnosis
05/2016
Country
MEX
State
Jalisco
City
Guadalajara
Hello everyone. I am from Mexico. In my family runs familial ALS. My grandmother 58, my mom 70, her only two brothers 57,58, her niece 34, her cousin 36, her cousin 38, her doughter 36, all of them died of fALS. None of them lived more than 2 years. Now after 10 years without a case, my brother 56, was diagnosed with bulbar fALS in oct/2016, but symptoms started Apr/2016. Doctors found SOD1 gen mutated. Doctors made several studies and all them were positive. After a year and 8 months my brother has no problem with arms or legs. His only problem is in mouth, tongue and throat. He can walk, excercise and even drive a car, but he can not talk or eat, we feed him through a tube direct to stomach. He lost some weight, but is stable.
His doctor prescribed DARDAREN or AZILECT (rasagiline) and MEMAMTINE wich are usualy prescribed for Parkinson. The symptoms show very low or no progression. My maternal grandfather died of Parkinson at 70. I pray and hope our God and Father give all patients, familiars and caregivers strength and courage to bear, understand and acept His will.
 
Mod note: Moved to own thread.

Welcome! Sorry you find yourself here, but a very warm welcome to you. You will find lots of support and information from other members.

~F
 
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