Could this be ALS area of forum

[Tomswife]

I am revisiting this topic, sitting outside on the deck, thinking of my Tom.
I think there it is very common for the CIB posters to post b4 s scheduled EMG, b4 a scheduled neurologist. It is as if the scheduled appointments get them past our sticky notes. No they don't.

And i think our wonderful moderators, who I could rave about all day, are often (not always) engaging too much. The poster wont let go of their anxiety if we enable them in a dialog.

Love ya.
Kathy

 

[Nikki J]

Sometimes the reason we answer is to refute their interpretation of their symptoms. Not for them but for others who read. If someone says x symptom is related to ALS and it isn’t leaving it unanswered may make it look like we agree. The anxious spend hours going through old threads to find “ proof” that they have ALS symptoms

 

[MupstateNY]

how about some canned responses, such as, please seek medical advice, we cannot help on an individual basis. or whatever the mods prefer. it is harder to keep going when trying to converse with a broken record.

 

[lgelb]

We have found that the personal approach is most effective to send them away, which kind of makes sense.

Again, you personally don't have to keep engaging at all. That is not expected of anyone here except the mods.

 

[Tomswife]

Yes. But it is taking energy and attention away from new members who have ALS.

 

[lgelb]

If I thought we were giving P/CALS short shrift on account of CIBALS, I would definitely want to change something. Please point to any examples, past or present.

It is true that we may have to gain some trust via dialogue to convey information effectively, that people don't always want to hear. Give and take also helps clarify things for the many lurkers who never post. And as Nikki points out, keywords of symptoms or issues that people can search for, help people that we never know about.

I will go back to the idea that CIBALS are people, too, often in several kinds of pain. In many cases, the right response(s) at the right time(s) changes their lives for the better.

 

[rmt]

For a while I used to read all of the CIBALS posts, but I realized that wasn't healthy for me, especially after my PALS passed away.

Now I glance at the first few lines of the first post in a CIBALS thread. It generally only takes a couple sentences to know if it is worth reading or if I should stop and let the mods answer.

Any additional posts on the thread, I skim or completely ignore them. For the people that obviously have health anxiety, sometimes I feel it is worth adding my two cents. I try not to be too harsh, but I do feel like there are times it is best to be blunt. I'm sure I miss the mark sometimes.

I'm guessing over time I'll read more or less depending on how I feel. When I start getting really worked up about how the health anxiety people are so damn lucky that all they have is health anxiety, then I know it is time for me to log off and take a break for a while.

 

[KimT]

If you go way back and read my first few posts, I sounded like I had health anxiety. One moderator, who is no longer here but took me to lunch two years later, even suggested I leave the forum. Nikki reached out to me in a private message and comforted me.

I think it’s entirely okay to suggest a person work with the doctor and okay to say it doesn’t look like ALS as long as it’s done in a kind way. Both Laurie and Nikki do this very well. If you can’t be kind, it’s best to say nothing and move on.

 

[duster]

I don't often post but commonly read (at least part of) the posts from folks concerned about their health. In my view the mods do a great job of giving sound fact-based advice, and redirecting the people who oughtn't be concerned about ALS. To the point of the sticky notes, the journey to diagnosis itself can be arduous, and if this site were available twenty years ago I'd have been posting about my dad's symptoms when we were working so diligently toward a diagnosis. Disease progression as we know is variable and ALS is still a diagnosis of exclusion, and progressing through the health care system in search of an answer takes time and energy and dedication. Part of the value here is, as Nikki said, in providing information to people who maybe need a place where they can sort through symptoms and concerns on their journey.

 

[MupstateNY]

i have seen some responses that i thought were a bit too harsh, sorry but i do not remember who, and also sometimes it seems like some pals/cals are dogpiling a bit, but i was told not to respond to those posts.

one of my children had severe anxiety starting at age nine, and i thought i could write a helpful response, but i did not want to be in conflict with the mod team, so i took a hiatus from the site and since coming back, i have given that area a wide berth. i do not run the zoo here, dr seuss reference.

i feel that whatever i suggest in brainstorming mode in this thread gets quickly shot down, kind of knee jerk, without indicating that anyone has thought much about what i wrote, so my conclusion is, mods, do what you want in that forum, and please do not display the threads in similar threads or what is new. my two cents.