Renaming THAT form

[seaside]

the forum named "do I have ALS" has a simple well-intentioned name. Advancements in search engine technology now allow typing every day English ( or other) questions into the Search box and away you go. Top of the list – that forum. I'm suggesting a new name and including a poll.

 

[AfraidButNotAlone]

Munchausen's ALS

Debilitating Uniform Munchausen Disorder Affecting Some Silly Egoist pSychos

 

[MaxEidswick]

>Debilitating Uniform Munchausen Disorder Affecting Some Silly Egoist pSychos

Rob, how unkind

how about "How to best diagnose if I might have ALS or MND?"

That way we can have a standard answer and not have to type so much ...

 

[Nikki J]

Joe I think this is well worth discussing. Thank you. I am in favor of a change too. I think we want to decrease the traffic of anxiety ridden, somehow get rid of the expectation that we can diagnose them AND my personal pet peeve that they get to hang around after ALS is off the table, but we also want to keep them off the rest of the forum. So we want that section to be obvious once they get here. Even now I spend a fair amount of time moving them off the real forums. Maybe part of that title should say something about not having a diagnosis yet. Max I like the idea behind your title. There is of course the stock answer which is see your physician and follow his/ her advice

 

[MaxEidswick]

>Max I like the idea behind your title. There is of course the stock answer which is see your physician and follow his/ her advice

you betcha and I can add a bit to that too -- Also, I'll program a key to type it. Like control-shift-/ types: This is an automated response:

read the **** STICKIES **** all is revealed there. 99.9% of your questions will be answered in the stickies.

 

[GregK]

"motor neuron disease" works as it's less well known than ALS.

A simple "MND" might be better.

However, either way we should consider adding the robots.txt to eliminate that specific subforum. Assuming it can be that specific.

 

[MaxEidswick]

>However, either way we should consider adding the robots.txt

?

 

[GregK]

robots.txttells site crawlers to not parse a given site or, hopefully, some sub-portion of a site.

I am not 100% sure if it works for forums, but they're just fancy websites....

 

[MaxEidswick]

>I am not 100% sure if it works for forums, but they're just fancy websites....


interestimg ... Nikki? Can you ask David?

 

[pecas]

This seems like a good time to ask why these forums are not behind a login? I feel exposed posting here in a public, Google-searchable forum. The Munchausen ALS forum could remain publicly searchable.

And I hate those posts. I really do. I can't read them. It's not good for the Love and Light plan I have in place for my remaining life.

 

[Dusty7]

As Nikki said, "...we want that section to be obvious once they get here." Therefore I think changing the name to something like "Do I have MND?" is counterproductive. Google will keep sending ALS searchers to us and they will then get lost (not knowing what an MND is) and end up on the wrong sub-forum. And the main purpose of creating the DIHALS sub-forum was to keep them somewhat isolated.

If we want to lower expectations that we can diagnose ALS, then maybe a slight name change is warranted. It seems what we usually end up telling most people is: It doesn’t sound like ALS to me.
So maybe a change to “Do my symptoms sound like ALS?”
After all, that’s the most we can really tell them.

 

[affected]

such a hard one

we want to contain them there, that is the purpose, but of course we don't really want them there either ...

I think that keeping answers to them short is one key. I often will state this is the last answer I will give on this thread. Then I have to hold myself back when some of the brilliant PALS here say stuff I just want to say something to ...

I like the way Max does his 'automated reply'.

We could always give the forum over solely to a certain coloured animal here to scare the crap out of and leave it all alone?

 

[MaxEidswick]

anyone want to add anything?

#1 - Read the **** STICKIES **** all is revealed there. 99.9% of your questions will be answered in the stickies.


#2 if you think you have a motor neuron issue, see your PCP and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND experienced!

#3 We are not doctors or diagnosticians, but people who are dying from or caring for ALS people who often type w/ 1 finger or their eyes, etc., so replying to anxiety-ridden hypo's is a pita.

#4 an EMG, properly done, is the gold standard test for ALS. But also, an abnormal EMG can indicate HUNDREDS of other, non-fatal, diseases. So listen to your doctor.

#5 ALS does NOT present with pain, cramps, or fatigue. In ALS, you feel perfectly normal but your muscles simply won't work. Typically, the first sign of ALS is a foot or a hand that inexplicably just won't lift up. It doesn't hurt or feel weak, it just is limp. That is paralysis.

#6 Your doctor is wise to look at other diseases. ALS is rare. In order for it to be ALS, it has to be nothing else.

#7 Anxiety is what leads many folks here and it is a self-fueling fire. Try to avoid using google and/or this form if you can.

FWIW & IIWII ...

 

[dalvin]

Well, if you want to scare the crap out of them, when they post a pic say something like, 'oh my god, that's the way my grandma's looked the day before she died', or something like that. Trust me, I've thought about it

 

[pecas]

Max, that looks good to me. I would spell everything out so they don't ask follow-up questions (like PCP). And I would add point 8 addressing the fact that for some of us (cough, like me, cough) it is extremely painful to have anxious people constantly chasing this disease, when many of us can't escape it. It's downright offensive how there seems to be this cult of ALS groupies. When I am looking at each day's list of new posts, sometimes fully half of them are these folks. It's depressing. Go to the freaking doctor already.