Puzzled about one Forum

[Schmidhogan]

Since discovering this site 6or so months ago I am not clear why we have a Forum entitled "Do I Have ALS". Seems that 80% are health anxiety who piss members off,understandably,or have a real physical issue which we confess we're not qualified to diagnose. So what service do we provide? One idea could be to maintain the Forum as closed or read only and keep the stickies and Max's points. Those who are interested can read the information provided but don't post until a proper diagnosis is made. Any thoughts? Alex

 

[Vincent]

We should allow the health anxiety types here as they perform a valuable service. In times of crisis within families there is always someone who seems to get on everyone's nerves and people vent at them thereby releasing pent up anger and frustration. They act as a lightning rod of sorts. In my family it was uncle Blue.
VIncent

 

[skipper66]

I agree with Alex 100%. The DIHALS even though I do read and respond is the most useless part of this whole forum. Some people do have some legit and intellgent questions. But, that isn't even a handful of them. The stickies and Max's points are all that should be on in my opinion. People shouldn't be allowed to keep bombarding us with questions. I don't know as much as some on ALS but can spot the anxiety ridden and occasional troublemakers a mile away. There is so much time spent on this part of the forum instead of helping those who really need support because they truly have it. People should be seeing their dr's and not us. Also, if someone insults one of our established members and results to name calling and childish behavior they should be banned. Which has happened to some but then I still see their lights on? Kim

 

[gooseberry]

I agree. I rarely respond in that section since I feel it justs keeps them going, unless I am telling them enough. I think it takes up a lot of people's emotional and physical energy.

 

[Tokahfang]

One reason we have the forum is that they come with their questions whether we have one or not. Those questions just get spread around all the other forums if they don't post there. This way there is one forum where they get posted or sent to by the mods, and people can ignore that one and read the other forums in peace.

That said, I have spoken to a lot of these folks long after they posted here. Even if it doesn't seem like it at the time, having someone who has seen/experienced what they fear and been puzzled why they think they have it does help them in the often months-long wait to see a neurologist or psych. Some of you who have taken the time for a few months to answer questions there would be very suprised by the good effects you've had, I think. Sometimes your answer, basic as it was, has been the nudge that someone with health anxiety needed to keep their job or some other key part of their life working. Sometimes it is the extra inch on the ledge that enabled them to keep from falling off of it. You don't hear it because when they are functional they realize they don't want to bother people here, but there is a lot of gratitude and respect that you never get to see.

 

[dalvin]

In my opinion, once their question has been answered, no one else should respond to them. Once a couple of folks have given their thoughts if we ignore everything else they write they will end up going away. One further point, I think it would help that unless they have a diagnosis that fits the alsforums they should be blocked from responding to any other thread. It adds to the aggravation when the dihals start answering other dihals

 

[patrick123]

The biggest issue is the web sites that help you self diagnose yourself. And most people imagine the worse possible scenario. When I was going through the diagnosis process I stayed away from the those stupid web sites. I let the doctors do their thing. And I answered their questions honestly without manifesting symptoms that I might have read about. The only time I used the Internet was to find out what an EMG was. My neurologist ordered it to be done one week after I saw him. I think he did that because I had lost about 50% of my muscle mass in my forearm. A week later my doctor calls and wants to see me the next day. After 2 months 87 vials of blood ( I counted ) and a host of other tests I had my diagnosis. That was a a pretty crappy day. That's when I finally went on the Internet to learned about ALS.
I remember when I was MUCH MUCH younger playing doctor was a lot more fun.

Patrick

 

[GilWest]

I wish that people would stop worrying until the doctor says it is ALS. There is really nothing you can do it you have it. It becomes a waiting game post diagnosis. A horrible, life-altering diagnosis at that.

 

[LoveMyKids]

Isn't that the truth!

The whiners are the ones that really try my patience. Drama queens wear me out. However, some people really just want to ask a few questions to help them get on the right track in finding an explanation for their issues. I think that used properly, the internet is a huge help in becoming more informed so that you can be a better advocate for yourself of a loved one. Unfortunately, I have had to deal with my share of bad doctors.

I don't think a forum could enforce a rule that says you have to have a definite diagnosis to post comments. A lot of the people posting are totally convinced they have ALS regardless of what the doctors tell them.

 

[Atsugi]

The purpose of the DIHALS forum is to keep them out of the other subforums. By giving them a designated place to air their anxieties, it keeps them out of the other subforums, so the legit PALS and CALS can talk without DIHALS interrupting us.

 

[Schmidhogan]

Well, I guess the majority think there is some value to the Forum for one reason or another. I appreciate those who are willing to reply to the posts there. Requires a lot of empathy and patience.

 

[MaxEidswick]

>Requires a lot of empathy and patience.

Ditto that!

 

[bigmark1954]

Schmiddy.......I feel ya on this to one! BUT lately we have had to endure some real sicko peeps in the DIHALS.
Much of the CRAP they spew is to abstract to conceptualize (horse poop)! IMO it is extremely disrespectful to us PALS and CALS, that are living in the real world.
I usually won't comment on the DIHALS, but lately there have been some real nut jobs that have disrespected my boys (Max and Al, etc.). That really pisses me off, and I could not help but express my feelings. When you look at how much some people contribute to this forum...it is difficult not to back them up.
The DIHALS has a place, BUT I wish we would just ignore the ones that are obvious hypochondriacs, and those who are just plain out of line.................
I will now crawl back under my rock:shock:

 

[davbo49]

mark you got another rock.

 

[Schmidhogan]

Big Mark: I support you all the way. I started this thread due that Planet guy. I'm embarrassed he's from California. Alex