Concerned - advice would be appreciated

[Coffeepot12]

Hello,

I come from an ALS family. My mother passed away due to ALS, so did my Aunt, and my Uncle passed away from frontotemporal dementia. I have never been tested but I would wager we are a C9ORF72 family.

I have had a fasciculation in my right foot since about age 14. I am 22 now. It bothers me psychologically given it is a constant reminder of the threat of developing ALS/FTD, but it has never appeared to progress into anything worse over the eight years I've had it. It is repetitive with the same rate of twitching over time, it is always in the same spot, and weirdly enough - I can pause it with my mind if I focus, although it is clearly a fasciculation and not a normal muscle movement.

The problem I am experiencing is that now my left foot appears to be twitching, but these twitches are not predictable, and not in the same spot - they're twitching all over the foot, and it's seemingly random.

I can upload a video at a later time to demonstrate the "mind pause" fasciculation and the ones in the left foot if need be, but I am hoping folks might be able to allay my fears that there is some atrophy in the left foot. My arches have always been somewhat high, but I am concerned the left foot looks a little atrophied compared to the right.

I realise I must sound a little paranoid, but given my family history it is disturbing to see fasciculations spread to new places. Otherwise I am fine - I can balance on one foot at a time for both feet, and I can run several kilometres, do push ups and things.

Thank you for your advice, and I am sorry for subjecting you to photos of my ugly feet.

 

[Nikki J]

Pictures really don’t tell us anything.

Twitching is so very common and even in FALS does not mean anything so we really don’t need a video thanks

I am sorry about your family. I am C9 FALS. If your family is c9 it doesn’t affect you until 35 or later. This is not what I think it is what the experts say.

FTD and ALS do make one think c9 especially in a family of European descent but it is not the only possibility. How old were all these people?

You should see a doctor to allay your concerns but it sounds like you will be fine. I can tell you a lot of people in my FALS group have twitched for years and are still fine

For the future genetic therapy is being worked on and is in trials for SOD1 close for C9. If you end up being a carrier you will almost certainly have good treatment available when needed. I am sure you don’t need it now

 

[affected]

I am sorry you are FALS background.

Canberra has an MND clinic - if you can't find it contact MND NSW and they will give you the details as they look after the ACT as well.

That is the only way to find out what is going on - we can't diagnose anything across the internet by text, photo or video. All the best.

 

[KimT]

I'm so sorry for your losses. It must be so hard to be a FALS family.

I noticed your name Coffeepot. Do you drink a lot of caffeine. Caffeine could make twitches much worse.

Have you considered genetic testing?