kevinw
Distinguished member
- Joined
- Apr 15, 2008
- Messages
- 203
- Reason
- DX UMND/PLS
- Diagnosis
- 01/2008
- Country
- US
- State
- PA
- City
- Poconos
I know I am 100% guilty here also for not posting a lot, but what the heck happened to everyone discussing PLS? When I joined this forum in April of 2008 it was the place to be. I remember refreshing the PLS page every hour and there were new comments or topics. Now the last post was from 07/02, almost two months ago? There were regulars here that would offer and discuss great information regarding their situation and experiences. I fear that it got to the point that everyone that would Google their symptoms and would "self diagnosis" themselves with PLS would come here and ask a question, well of course that is the ultimate sin and would be run off and belittled. Even if their neuro would suggest it as a possibility they would be discredited as if having PLS is some secret society that you must join. I know PLS is a "rare disease" and everybody is different and progresses differently, so maybe everyone should go their separate ways and not confuse the situation more? I mean what the heck there is no cure what is the point of talking about it or resourcing it trying to eliminate it? Also, Facebook Groups have become more popular then back in 2008, maybe everyone migrated there. It just makes me sad to think that maybe people are avoiding joining or posting in the forum due to a stretch of people that played "know it all's" or "basically bullies" over someone asking a question. It was never meant to be a diagnosis forum above a doctors diagnosis, but darn, for those of you here that were here 9 or 10 years ago you have to admit the loss of interest in sharing information. Well, that is my rant for the day...again I admit I also have not contributed my experience as maybe I should have. But at this rate with the last post being almost two months ago and every thread being locked, what's the point in even having PLS as a category?