A Question. I'm Quite Puzzled

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Katy Sunshine

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Joined
Jan 14, 2016
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20
Reason
PALS
Diagnosis
2/2016
Country
US
State
FL
Hi All,

I've been doing some reading here over the last couple of days and first of all I must say, y'all have the patience of saints. I've been reading posts from a fair number of people who seem to *want* or *need* to have ALS. I understand people worrying at first and having questions, but to be told repeatedly by doctors, tests and by all here attempting to put their fears to rest, that it is NOT ALS... well, I'm just flat out puzzled. Could someone help me out with this?

After the 4th or 5th post by these persons, I've completely lost my patience. I want so badly to say, "Look, if you want ALS you can have mine!" I see a pattern with folks. They ask a question, you allay their fears in no uncertain terms and then they say "But what about this?" It's never-ending. They totally disregard your answers and add even more nonsensical symptoms on top of what you've already "debunked".

I'm sorry if this post is inappropriate. I'm just really trying to understand. Perhaps if I did, I could show more tolerance. Thanks.

Sincerely,
Katy

“Hope” is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all -
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,470
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
Hi Katy
This has been discussed many many times.
Most people choose, wisely I think, to ignore that sub forum. It can be extremely annoying and PALS and CALS have far more pressing concerns.

The history behind it was people were coming and asking these questions on the regular threads. This is a place for them to be quarantined if you want to think of it that way. You can ignore the section and be fairly confident not to encounter this in the other sections of this forum ( occasionally someone posts out of their area if you see it press the report this post button and the mods will take care of it)

There are people with very legitimate concerns. Some of our current PALS started there before diagnosis. Others turn out not to have ALS but something else. Then there are people who have a concern, are reassured and move on.

You speak, of course, of another group- those who apparently have severe anxiety issues. It is a tenet in health anxiety treatment that reassurance does not work. You see illustration on the subforum every day. We control it as best we can, we have sticky posts to try to address common issues. I find the main sticky quoted elsewhere and those people seem to find it helpful. Unfortunately it generally does not help those with health anxiety issues.

Don't waste your precious energy worrying about this if it distresses you. I saw your lovely and thoughtful reply to one poster. It was very kind but only read and reply if you want to. You have so many important uses of your time
 
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twitchykitty

Distinguished member
Joined
Feb 17, 2013
Messages
102
Reason
PALS
Diagnosis
01/2013
Country
AUS
State
qld
I read them a lot , I put the extreme cases down to a mental health issue mostly anxiety . Which by no means is anywhere near as crap as what we have, it can still be debilitating. Putting it in that context it can help to pity them and understand they truly do think that somethings wrong. Best to avoid reading them if it's upsetting:( you don't need the added stress. That said there are genuine cases though that does not apply to at all. Having had anxiety myself from 16 I find it easier to empathise. I also seen a lot nursing, the most commonly faked illness was seizures . I too agree some people here have the patience of a saint
I hope my replies ok , it's just my personal theory I could be wrong
 

Katy Sunshine

Member
Joined
Jan 14, 2016
Messages
20
Reason
PALS
Diagnosis
2/2016
Country
US
State
FL
Thank you, Nikki and Kitty for explaining this to me. I'm sure you're both correct. Yes, it is a bit distressing, so I'll avoid that area and will not keep revisiting it. That would have me doing the same thing they are. Borrowing trouble. Thanks again. :)

Sincerely,
Katy

“Hope” is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all -
 

Ells

Distinguished member
Joined
Oct 26, 2015
Messages
206
Reason
PALS
Diagnosis
03/2007
Country
XYZ
State
MY ACCOUNT
I just don't read that forum Katy.

I only have a finite amount of time, energy and, if I'm totally honest, empathy, which I direct towards folk I can help in practical ways.

I am grateful to the kind people who do reply, they're more gracious than I'll ever be!
 

swalker

Very helpful member
Joined
Dec 11, 2014
Messages
1,069
Reason
DX MND
Diagnosis
07/2014
Country
US
State
Colorado
I think it is a testament to the caliber of this place that the DIHALS forum exists and is patiently patrolled by some faithful members.

I am constantly amazed by the patience and compassion shown in the various responses I occasionally read there (I generally steer clear of it).

The folks asking questions there have a real need, though most are unlikely to have their need addressed via a forum.

It is always heartbreaking when one of the DIHALS members winds up needing to post in the Newly Diagnosed forum:(

Steve
 
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