My mother have bulbar onset ALS and now im scared to have it :(

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TTIger

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Nov 25, 2020
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1
Reason
CALS
Diagnosis
00/0000
Country
CA
State
QC
City
Québec
Hello, im a 51 yo man from quebec, canada, so sorry for my english, since its not my first langage, im french canadian.

My mother, 75 yo, was diagnosed last year with bulbar onset, and it 50/50 genetical/family. i mean one of my uncle 72 yo died 3 years ago from ALS, now my mother begin to have some issue to talk as her tongue is almost paralysed and we are waiting for a wheelchair for her.

But ive done the mistake to read too much about it and now im scarred as hell to have it, as if its family disease, ive 50/50 the chance to get it myself :( and as im getting older some stuff happen to my bodies...

so here are some «symptoms» i have, and its probably only paranoia.. .

sometime (not all the time) i feel numbness and like ants in my left front thigh depending on how i site, probably i clinched nerf
ive fasciculation in my eyes sometime, i very often feel dizziness, probably ive to change my glasses.

ive sometime fasciculation in my arms and legs when i site or forcing probably the same clinched nerf. sometime depending of the posture i an , i feel numbness in my claf.


the most bizarre thing is like 2-3 week my little left toe feel like numb, but its very difficult to know if i lost strength or no since almost all toes move «together», only move one toe is kinda difficult.

all those thing may seem not very important for most people, but when a i look at my family history and the fact that i grow older.. im begin to stress for my own future :(
 

Nikki J

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Joined
Mar 22, 2012
Messages
9,883
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Hi
sorry about your mother and uncle.

your symptoms do not sound like ALS. Numbness is a feeling ( sensory) symptom and ALS is a motor ( movement) disease.

as it sounds very probable your family has FALS ( genetic ALS) it is very very important that your mother be genetically tested. If there is a family mutation identified then you can decide whether to test for it. There are treatment trials for 3 mutations now for diagnosed PALS. There will be prevention trials in the future - hopefully the near future. Those would only be available to those who are known carriers.

there is a lot of hope for FALS families but you need knowledge to fight it.
 
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