Forum idea

[moosey]

I think a lot of visitors here scour the Could This Be ALS forums looking for similar experiences and related advice. Every now and then someone returns and updates they don't have ALS, sometimes they are diagnosed with something different.

If the forum had a section devoted to "It wasn't ALS" i think a lot of people would be happy to contribute what their symptoms were, maybe link to their threads, and provide good news on what it ultimately actually was.

I understand this is primarily a support forum for CALS and PALS, just think it might be easier for the dedicated mods and worried visitors if they could readily see posters similar to themselves and outcomes that ultimately support what the mods are telling them.

Take care all

 

[Nikki J]

They can update on their threads or if closed start a new thread. Most seem not to. As far as what it was when it wasn’t ALS we have a section in the sticky and have added to it with a few diagnoses here. We don’t have room for yet another subforum and I doubt it would make people return. It also sounds like it could turn into the undiagnosed trading symptoms which became a huge problem here and led to the rule of not posting in other’s threads That had the mods spending time combating false information

I appreciate the thought but I don’t think it is a good fit here.

If you have a resolution to your issues to share please do so

 

[moosey]

No i do not have any resolution to my issues. I'm speaking as a person that have tried to search for similar symptoms and alternate diagnosis. The search algorithm isn't very sophisticated so its tough to find cases i can relate to.

Not sure how it would be a trading of symptoms, it could easily be locked after each post, as it's just a final update.

Anyways just an idea from the shoes of someone that is in the middle of a mystery diagnosis with worrying symptoms, who reads the forum frequently. I thought it would be very beneficial to worried people.

I respect your disagreement, take care and thanks to all for doing what you do.