Uncle has possible ALS

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Corey S

New member
Oct 3, 2021
Learn about ALS
Hello Everyone,

I was hoping that I would not ever be back here but it looks like my Uncle is now going through this process and I would really like some guidance on how to navigate this.

My uncle has been experiencing some random twitching on his right eye lid and a few different areas of his body, but by far mostly the right eye, so he went to get it checked out. The 1st doctor he went to didn't say that it was ALS but that he wanted to schedule an EMG anyway. He has no other symptoms at the moment.

The other day he went to get a 2nd opinion, this doctor said that he was 100% confident that he did not have it due to just twitching and no other symptoms, was of course was what I would have thought. Plus, the 2nd Dr said that he has not heard of any cases where ALS affected the eyes, especially not at the start of the disease.

What do you all think my uncle should do? He doesn't want to do the EMG if it will be waste since he does not have good health insurance, but he also wouldn't mind having the peace of mind.

Thank you as always for your support, it is greatly appreciated!
I've also never heard of ALS starting as eye twitching.
If I were you, I would step back a little and just advise your Uncle to find a doctor he trusts and follow them.

Pretty much, just like we told you last year that your twitching wasn't ALS, we will say the same now.
Hello Affected, thank you for your quick response! I will do my best to take a step back and tell him the same things that you all have told me and so many others. It will not be easy though, since apparently he has pretty bad health anxiety too and is pretty shaken up about this.

Should I also tell him the same thing that you all told me that without weakness, twitching anywhere in the body (no matter where it is) means nothing? It also doesn't matter for how long either right? He's had this for about a week or so, so I know that has him concerned too that it is not going away.

Should I go with him to his next appointment? I think he is scheduling another one with another doctor for another opinion. Or is this a bad idea since I too have health anxiety? I just don't want to trigger him even more either, but also want to make sure he has support. He doesn't have many people in his life right now unfortunately.
Hi Corey-

I'd dispute the title of your thread. Your uncle does not have possible ALS- he has been cleared of it by 2 neuros. I am wondering if your own fear of ALS is driving your discussions with him. I'm not sure if it's healthy for either of you to participate in his medical care. Of course, that's between the two of you what he is comfortable with and whether he feels the need to visit with yet another neuro.

Please take care of yourself.
If he has health anxiety and so do you, please don't get involved at all.
Don't mention ALS ever.
And don't buy into it by making it a reason to come back here.
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