A word of caution...

[Nighthawk]

I want to remind people here (PALS & CALS alike) that there are posters (newbies) that resort on using multiple identities to sow discord and confusion. One of their tactics is to try to drive a wedge between members of our Forum community by drawing a distinction between who purportedly answered their questions in a "helpful and friendly" way, versus the "less helpful and critical comments" by others.

These posters (newbies) with several Forum identities generally have symptoms that point way away from ALS but tend to be argumentative and keep repeating somewhat hair-splitting questions about why their symptoms do not count as ALS.

Given the very easy way of creating new Internet identities, it's very likely that these people (newbies) would continue to return continuously here under new nicknames and/or identities.

You've got to be aware of new threads that bear some similarities and resemblances to earlier threads which have proven to be very troublesome. The themes and even the tone of the writing may seem familiar or very similar.

While we can and should offer help and friendship to those in genuine need, let's bear all this in mind when replying to such threads and remain watchful against any attempts to splinter our small PALS/CALS community.


Best regards,

 

[paul71]

I think this forum is a victim of it's own "success" for lack of a better word. There just aren't many general neurological forums out there that are up to the quality of this place.

In my case I know there is something really wrong with me. But I'm not going to waste your time asking questions that even doctors can't answer. I'm just realizing that the body can have any condition it damn well pleases. But if doctor after doctor says it's not yet meeting the diagnostic criteria for ALS, I don't post updates or ask questions on this forum anymore.

 

[Barbie]

Carlos, this has been an ongoing problem over the years...I never get upset when someone disagrees with me or makes a negative comment about me--especially if they are a new or DIH-er. It is easy to mis understand the way a comment is made--thinking that it is a put down or a negative comment when it is not always meant that way. if they are a DIH and they think I am being mean--well they are probably right

We have some very wise and wonderful members here--but everyone has bad days! And if it looks like someone is trying to "stir the pot" I bet they are!

 

[ottawa girl]

Well said Carlos, Paul & Barbie.

I've also noted distinct similarities in writing styles and identified ( and reported) cut & paste DIHALS posts over the past year. At the end of the day, it doesn't matter to me. I can sleep at night. In French we say, " je suis bien dans ma peau" - I'm well in my skin.

Admittedly, replying to some of their queries has been, on occasion, a way for me to blow off steam too!

If someone is so feeble minded as to spend time toying with sick people ... well as my Mom always said.." What goes around, comes around". I pity those lonely, empty, cold hearted, loveless trolls.

 

[skipper66]

Good comments everyone.

 

[johnnyliverpool1]

does my head in when i see some of our members falling for the nut jobs chatter......but we are getting much better at spotting these weirdo s.......but you wanna help so you have to be sure....johnny

 

[Uptown]

I would like to jump in here if I may. First, I do not have ALS. I was diagnosed LMND, PLS, UMND, possible ALS, spinal stenosis, thoracic paraplegia, brain stem disorder, dysautonomia and a few others. I disagreed and went to a dozen docs, mostly neurological/neuromuscular. I have never had a clean EMG. Radiation is destroying my spinal vertebrae from C-1 now into the thoracic spine. My muscles have wasted to the point of losing 100 lbs, my fine motor skills are suffering in my hands and legs. I have lost so many facial muscles that people I haven't seen for even a year don't recognize me. Yet through it all, you folks comforted me during the roughest of times when I was near death in hospice. I felt so bad I could not find anyone in the medical community that would say much beyond incurable and progressive. Yet all of you jumped in and gave me more information than I knew was available to help me deal with the spasticity, fasciculatuons and muscle wasting. I only breathe now because of stacked breathing and a VPAP.

Words can't express my appreciation for the love shown to me, the tips and tricks to keep me alive! I lost a step-sister to ALS years ago and never thought I would be asking questions of you. Your will, your desire to be of help, your "spunk"...all of it was way beyond any expectations I had when I first showed up here. I try to stay out of your business and just learn what I can. Thank you from the bottom of my heart!

 

[Txgirl]

I get the feeling sometimes (alot of times) that I am on a mental health forum instead of an ALS forum. I know this world is full of loons but I had no idea how crazy some people truly are until I came to this forum.
I do not understand why anyone would want to convince themselves that they have this horrible disease, when clearly they do not!
Some people on this forum think I am not a nice person because of my attitude or comments to these idiots. I do not care what people think anymore.
I am terminally ill and I don't have to care! The DIHALS loons are not dying. They are just here to disrupt this forum of people that are truly suffering and dying of ALS. I will not play into their sick mind games and coddle them as some people here do.

 

[YummyDrFood]

Txgirl,

I've been reading through this forum's posts, and you are actually one of my personal favorites. You offer BS-free advice, and I really value that advice because I think it comes from solid experience. I also know that you have a big heart because you take everything to heart, as evidenced by your posts lamenting . I really see shades of GrampAl (spelling?) in you. I hope I represent the "silent majority" that appreciates everything you do. If I have ALS (God willing I don't), I want to be just like you and all the people who sacrifice their time to console the anxious people that post here. You and others like you are heroes.

Sorry if that sounds sappy. It's just how I feel.

 

[Txgirl]

I am not a hero. I am simply a person living & dying with this crappy disease.
Although, I graciously accept the compliment of resembling GrampAl.

 

[Nighthawk]

When things get "out-of-hand" here (you probably correctly interpret what I really mean by "out-of-hand") I usually spend some time at ALS-TDI and keep checking back here from time to time.

Although (ALS-TDI) can be found through any decent Internet Search Engine, people (newbies) with "muscle twitching", who do "100 push-ups a day" , who "run 5 miles every day", etc., hardly end up there with the long questionnaires they end up here.

I spend some time of my day back there and, keep checking back here to see if somebody in genuine need for help needs some of my advice.


Regards,

 

[Txgirl]

Thanks Carlos I know the place, am a member & will be frequenting it more often.