Renaming THAT form

[Nikki J]

Tell them if their main issue is twitching they need to go to the bfs forum. If they have weird neuro symptoms that are not ALS try neurotalk and there are forums for health anxiety

 

[pecas]

hypo's = hypochondriacs

Man, I love the "failing, not feeling" phrase. So true.

Looks great to me!

 

[MaxEidswick]

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

#2 if you think you have a motor neuron issue, see your Primary Care Provider and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease) 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 hypochondriacs is pita (pain in the ass).

#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 forum if you can.

#8 ALS is about failing, not feeling, so forget the "feeling" symptoms

#9 Many of us cough/gag/choke and it is difficult to have anxious people constantly chasing this disease, when we can't escape it. It's downright offensive how there seems to be this cult of ALS wannabees/groupies. You don't want to fall into that bucket do you?

#10 If your main issue is twitching go to the bfs forum. If you have weird neuro symptoms try neurotalk. There are also forums for health anxiety.

FWIW & IIWII ... For What It's Worth and It Is What It Is!

 

[Nikki J]

Hi all
I moved Max's revised auto response to dihals as a sticky Think it needs a better title. Please post here if you have an idea. I also did another sticky of posting guidelines. Again please comment here if you have ideas or comments thanks

 

[MaxEidswick]

latest ....

#1 - Read the **** STICKIES **** all is revealed there. 99.9% of your questions will be answered in the stickies. Especially Sticky " Answer you may get"!

#2 if you think you have a motor neuron issue, see your Primary Care Provider and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease) 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 hypochondriacs is pita (pain in the ass).

#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 forum if you can.

#8 ALS is about failing, not feeling, so forget the "feeling" symptoms

#9 Many of us cough/gag/choke and it is difficult to have anxious people constantly chasing this disease, when we can't escape it. It's downright offensive how there seems to be this cult of ALS wannabees/groupies. You don't want to fall into that bucket do you?

#10 If your main issue is twitching go to the bfs forum. If you have weird neuro symptoms try neurotalk. There are also forums for health anxiety.

FWIW & IIWII ... For What It's Worth and It Is What It Is!

 

[MaxEidswick]

I put it here if any want to cut/paste ...

https://www.alsforums.com/forum/blogs/maxeidswick/948-dihals-response.html

 

[MaxEidswick]

>Think it needs a better title.

"For all entering this forum, please read the following important information!"

#1 - Read the **** STICKIES **** all is revealed there. 99.9% of your questions will be answered in the stickies. Especially Sticky " Answer you may get"!

#2 if you think you have a motor neuron issue, see your Primary Care Provider and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease) 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 hypochondriacs is pita (pain in the ass).

#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 forum if you can.

#8 ALS is about failing, not feeling, so forget the "feeling" symptoms

#9 Many of us cough/gag/choke and it is difficult to have anxious people constantly chasing this disease, when we can't escape it. It's downright offensive how there seems to be this cult of ALS wannabees/groupies. You don't want to fall into that bucket do you?

#10 If your main issue is twitching go to the bfs forum. If you have weird neuro symptoms try neurotalk. There are also forums for health anxiety.

FWIW & IIWII ... For What It's Worth and It Is What It Is!

Lastly, if you are still interested, search for "ALS from both sides" or "the abc's of als"

 

[affected]

It's looking good Max.

I guess #9 is trying to address those fearing bulbar onset which isn't covered in #5?

I like the way you have put this together so that it can just be quickly delivered to them.

 

[GregK]

I moved Max's revised auto response to dihals as a sticky Think it needs a better title. Please post here if you have an idea.

Nikki, how's about "Hey! Read this first!"

 

[seaside]

If it is possible all new threads in that forum should require checking several of those annoying "I accept the terms" checkboxes. For instance:
yes I have read all of the stickies.
Yes I have seen a doctor.
Yes I have had a second opinion by a qualified neurologist.
Etc.

 

[gooseberry]

Could you have Max's list be "required" reading somehow before you can post? Like a pop up window? It seems many just get to the sub forum and post away never having read any of the information already available on the site.

 

[dalvin]

Maybe add this in there too,
If it becomes obvious that you have not read the stickies, seen your doc, or keep adding to your thread with 'but what if' or 'I also have' you may be treated roughly

 

[pecas]

I was mulling this over as I fell asleep last night. I think renaming is critical. The name invites them to do exactly what we get upset about. It invites them to ask us to diagnose them. The only way I would recommend keeping the sub forum as is is if clicking on the sub forum led to a full-page document stating that we won't engage in internet diagnosis and please visit a neurologist or psychiatrist, whichever seems most appropriate. Sort of like a flytrap sub forum.

 

[Dusty7]

I think we need to consider that the harder we make it to post to the DIHALS subforum the more people will just post to other subforums--like General Discussion or Newly Diagnosed. A lot of these people who are suffering from extreme anxiety are not going to care what our rules are, they just want to post and talk about how sick they are. And the tougher our rules, the more they will just ignore them and post anywhere they can.

 

[pecas]

OK, so my backup idea was to ignore the posts. As hard as that may be, it might be better for them and us. Keep the sub forum as is, leave the stickies, and leave them be.