Are you here because of the Ice Bucket challenge?

[Nikki J]

We are having an influx of people who have learned about ALS from the Ice Bucket Challenge

You seem to have these things in common

Found out about or learned more about ALS because of the Ice Bucket Challenge

Suddenly developed some kind of " symptom"

Are young ( so statistically HIGHLY unlikely to have ALS)

Usually admit to a history of anxiety

And decide to post on a forum where we are fighting for our lives

Please reconsider posting. If you must go see your physician

Thank you

 

[MaxEidswick]

....

....

 

[skipper66]

Some have true anxiety and I'm sorry for that. But, there are others that are just plain jerks .

 

[Barbie]

nailed it Nikki, but they are so into themselves that most of them will think this doesn't apply to them

 

[Nikki J]

Likely Barbie. Suggest we all ignore them. Nothing we can say will help

 

[skipper66]

I know we are supposed to be respectful to people but it should be a two-way street. I'm sure the wannabe posters are just sitting back laughing at how p.o. they are making me. Kim

 

[dalvin]

For the most part, I refuse to answer them unless it appears that they may indeed have ALS symptoms, most don't. And if their post is long I skip right over it. I don't come here to read fairy tales

 

[JohnStatic]

Yes even the hypochondriac and anxiety forums I frequent have a huge increase in threads of those who think they have ALS.

 

[JohnStatic]

Likely Barbie. Suggest we all ignore them. Nothing we can say will help

Hi Nikki, I would like to say that the reassurance you gave me a year ago was enough to get my mind off ALS and eventually symptoms went away. They were obviously caused by stress and anxiety I was going through at the time. I thank you for that and your warm responses. It's gotta be a full time job dealing with people like me. Not sure what the percentage of these threads actually turn out to be ALS after full work-up.

Unforuntalty most of us will skip the stickies because we always think our case is different :-?

 

[Nikki J]

Thank you. That is nice of you to say. I l looked at that thread just now. Sad to say both Helen and Elaine who answered have died since.

The percentage of DIHALS who are ultimately diagnosed is very very very low and the vast majority stand out from the start as having something going on that is concerning. Even out of that subset the majority end up with something else
Most of the PALS here only joined after their diagnosis. ( I am an exception but I joined after my sister's diagnosis and I originally joined for her not me)

 

[pecas]

What kills me, when I occasionally read one, is how many don't use any punctuation at all. It's like a stream of consciousness or something. I can't absorb information like that. I wonder if that's stress, too? Weird.

 

[Kosmoskatten]

I think many people are so stressed out, they type from their phone and just want to get it all out.

But they change after the challenge is very visible, unfortunately.