Responding to "Could it be"

MJT

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This forum should have a standard reply to the question, "Could this be ALS?" The only appropriate response is, "We do not diagnose ALS. Please see a doctor." Anything else makes me question the validity and ethics of this site and its administrators.
 

Nikki J

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This is from the sticky that people are asked to read before posting
First, in spite of the name of this section, this is a question that can only be properly answered by a doctor seeing and examining you. We can offer an opinion as to whether your symptoms sound like our experience of ALS. We can give our best advice on whether to push for another opinion. However, first and foremost if you have a worrisome symptom, see your doctor. If you have not yet done so and followed their recommendations, don't expect us to say anything different.

so we already say that and people choose to post anyway
 

MJT

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I'm not sure where or what the sticky is. I am very grateful for this site, but "ALS isn't on the table here" is an inappropriate response from a moderator.
 

Bestfriends14

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The poster has been directed to read the sticky and then go to her doctor for a diagnostic consult. In so far as her symptoms go, in my opinion, ALS is not on the table. Her symptoms simply don't match up. I've been involved with the ALS community for many years now, and the difference in onset of those diagnosed are vastly different than Hannah's are.
 

ShiftKicker

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@MJT we direct people to the Read Before Posting thread if they haven't indicated it has already been read. It contains a vast amount of information and it's the first thing that should be accessed by people who come here looking for answers. In it, it directs people to consult with their doctors first as well answers many of the questions that bring people here. It very clearly indicates this forum is not a replacement for actual medical attention.

This post has slid off topic from the original questions made by the poster- we do ask that threads in this subforum remain focused on the original posters' questions. If there is a new topic that may divert from the op, we invite people to start a new thread in the appropriate subforum.
 
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lgelb

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Yes, MJT, just a reminder that you can block the entire CIBALS forum if you so choose, so you don't have to see ithese threads. However, judging by the followups, it is clearly helpful for many and even life-changing for some.

As you have probably seen, much of what is found on the Internet relative to self-assessment for or symptoms of ALS is misleading at best, inaccurate at worst. Moreover, not everyone in the world has or can access established care with a primary care clinician, though that is certainly where we refer the majority.

CIBALS is also sometimes the "front door" for P/CALS, so if for no other reason, it will always be open in more than automated form.

Best,
Laurie
 

KimT

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MJT, I understand your reasoning. I think it's very dangerous, no matter how much one knows about ALS, to say yes or no. However, I do see a place for responding with our experience and knowledge. I cringe at responses that totally dismiss people in a demeaning way such as "congratulations, you don't have ALS."

I believe if a forum is open to entertaining a serious question such as "could this be ALS" the responses should tread lightly in their tone. Even if one is suffering from severe anxiety, there is a nice way to say this forum is not for you.

I was treated very well when I was in limbo. When I read my first posts years later, I could have been discouraged or dismissed. I wasn't. The administrators were kind to me.
 
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