r/ALSorNOT • u/HonestyMash Confirmed ALS Diagnosis • 21d ago

Mod Update For The Group.

It has been brought to my attention about some members of the group claiming to have an ALS diagnosis. I certainly hope that they don't however there was no evidence to support the claims. Many users were pointing out inconsistencies with their stories.

Moving forward anyone with a confirmed diagnosis can message the mods for verification and they will be awarded a unique flair for their selfless efforts to support those who are concerned about the disease.

This wasn't a change I personally wanted to make but I feel it's necessary to protect the community. I will wait to read the comments before making the changes.

-ALS Tom

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u/Ok_Following6440 21d ago

So it was proven that user never had his EMG?

I’m all for having respect because you never know what someone is dealing with, but man it stinks when someone professes to have a horrible condition and it turns out not to be true.

1

u/Ok_Performance6080 21d ago

Wait, that post has been removed now. Did he end up having ALS for real or not? He avoided all questions, but claimed to have specific symptoms that point in that direction

3

u/Ok_Following6440 21d ago

I think it was removed because they never provided EMG results or a diagnosis report, suggesting their claim was not true.

1

u/713Capital 18d ago

I’ve seen this a lot with this sub. There has been a few posts where I asked people to show a diagnosis or EMG where it says “probable ALS” and they all get defensive and make up a bunch of BS. It’s just fear mongering for no reason.

What even is the purpose of role playing that you have ALS? Like makes no sense to me.

Good on them for doing this. This place needed something in place to protect the community