Eyelid twitching leading to eyelid disfunction?

[SurrealReality]

Hi! I havent been officially diagnosed yet, however this is NOT a "do I have ALS" post. They've done all the tests and, as I'm told, are just waiting to see if umn signs develop.

Anyway, on to my question... my symptoms began with eyelid twitching. I'm completely terrified that this means my eyelid function will deteriorate much more quickly than most ALS patients, and I'll end up without any means of communicating long before my lungs give out.

Does anyone here have any experience with eyelid twitching early on in the disease? If so, are you (or the person you care for) still able to communicate using eye -tracking software later on in the course of the disease?

 

[lgelb]

Were you diagnosed as "probable" ALS? Normally there is no reason to wait for UMN signs before diagnosing ALS even with an adjective like that in front of it -- the LMN + UMN at onset thing is more about trials and academic papers than reality. It is a relevant question because of issues such as federal benefits, any employment-related disability benefits, etc.

Are your eyelids still twitching? Are you still able to open and close them?

Many PALS do not end up communicating via eye-tracking, FYI. The question is whether you will have some means of communication. Your limbs might progress more slowly and so you might still have a finger...there are many possibilities. But twitches at the beginning in a particular muscle do not mean that it will always stay ahead of the others, either.

You might even be an EMG "brain wave" candidate (a technology that is developing and scaling) one day.

Anyway, if you have ALS, you already have a lot on your plate so don't borrow the very worst. We are always here, every state has an assistive technology department, your clinic probably has OTs, etc. You will have support as you need new communication options.

Best,
Laurie

 

[KarenNWendyn]

Eyelid twitching (blepharospasm) is incredibly common in most people, even without ALS. There’s a good possibility that your eyelid twitching is unrelated to your motor neuron disease and will not lead to eyelid weakness anytime soon.