Give these people a break D:

[Caliburn]

hey everyone, im just as concerned as you about my strange symptoms possibly being ALS, but the people on this board arent doctors, all they can do is give their opinions and or comments on your condition(s). what would you do if they said 'yes, you definitely have als.' and conversely, what would you do if they said 'its definitely not als'. i know for a fact if their answer was the former, you would seek a second opinion, or not believe them, and if it was the latter, you wouldn't believe them either. i know, ive been in both boats. i know waiting sucks, but its what many people have to go through to disprove (or unfortunately confirm) an als diagnosis.

as has been stated by alot of people on this forum, its difficult for many to reply, and for more than a few it takes a considerable amount of time to do so. so while me and you are typing away our worries with ease, please keep in mind that some people are replying with eye gaze software, etc.

im just speaking from the point of view of being in the same position as all the other worriers out there. give the internet (in its entirety) a rest, and enjoy your life. your answer will come, for better or worse, with or without the help of the wonderful people on this board, any answers you receive here will change nothing, although emotional support is definitely always good to have



Caliburn

 

[vickim]

Thank you. I don't know if it will do any good, but I am glad it being said again.

 

[Caliburn]

i realized it. hope more people will. i feel like many of the worriers that come here think everyone here is doing just great. i dont want to be a burden. and i dont think we should burden those who already have a huge load to carry.

 

[ottawa girl]

I'm in love! Well maybe not love, but I'm in serious like!

Cal - you are a sweetheart of a DIHALS!

 

[Txgirl]

Thanks Caliburn - I do not even post in this section anymore because my hands are atrophied and I type with 2 fingers, which are my middle fingers on each hand and still have to correct typos in every word.

 

[Caliburn]

dont thank me! its yall that deserve thanks!

and much respect!

-Caliburn

 

[ysabel]

great post cal! ditto what's been said.

 

[olly]

Thanks caliburn but sadly it falls on deaf ears.......every now and again it gets mentioned but to no avail.

 

[venerable]

Good point. I was mindful of it when I posted my own question. Nice to see it's on someone else's mind too.

Human nature being what it is though, seven billion worriers flying in close formation after all, when you open a forum with a sign over it inviting people to come in and ask the question 'do I have ALS?' what did people think was going to happen? Its a scary topic, you guys know it better than anyone and by God I wish nobody had to know it at all believe me. But what are you going to get coming here? Fear. Paranoia. Denial. The 'yeah but I KNOW something's WRONG' mindset.

I am a professional historian, teaching in researching in academia. I once ran a website offering to help people trace family history for low cost themselves as opposed to ancestry.com etc. I wanted to provide an info service. All I got was request request request to do the job for them and abuse when I politely refused. We live in an information age and if an answer's not immediately answered with what the asker wants to hear then hell breaks loose - and precious few want to know the face and name behind the answer or what its been through. I can empathise with the tidal wave of demands and apologise if my own question added to it. I meant no offence.

Sorry to ramble but its been a long day. I suspect it has been so for many.

 

[Txgirl]

"when you open a forum with a sign over it inviting people to come in and ask the question 'do I have ALS?' what did people think was going to happen?"

I agree with the above statement. That is why IMO I do not think this section of the forum should be here. We are not doctors and cannot answer the question of these people. If a person feels ill or that something is wrong with their body. Then they need to go to a doctor! They do not need to be asking terminally ill people on this forum if they too have the fatal disease.

I knew something was not right. I went to the doctor. I did not get on a forum & ask people if I had a fatal disease. Get rid of the DIHALS section and hopefully the problem would be solved.

 

[paul71]

Maybe the Do I have ALS forum should be sub-divided.

1). "Hypochondriacs"

2). "Trolls"

3). "I just ran a marathon and my calf is twitching."

4). "I don't care what my 5 neurologists think, I want an amateur opinion". (Moderated by Dr. Bluedog.)

5). "Legitimate questions."

Just brainstorming here...

 

[Debd4l]

I think I saw before that they keep the DIHALS forum because if they did not the thought was that people would post those questions in other areas thus breaking the flow of topics from people who actually have ALS and their caregivers etc..

I can see where some of the posts are repetitive sometimes in the DIHALS section. I can also see why people who actually have ALS or care for those that do could get bothered by them. There are some people though who actually do have something going on medically speaking whether it be ALS or something else, so I think the forum is valid. It has helped me although I am somewhat still in limbo. I think what the OP on this thread said is true though. For the new people posting in the do i have ALS section please be mindful that the people here either have ALS, care for someone with ALS or have other health problems. It is hard for them to type sometimes, or they may be short on time so do not repeatedly post the same questions!

 

[affected]

maybe if they just didn't get as many replies?

no, I will correct myself, it would then be like not having this section and they would just invade the other forum sections ...

no good answers it seems

 

[vickim]

There is no simple answer but those who choose to help can help and those who don't want to don't have to. I help here and there. I offer my opinion because that's all it is and if it helps great. But those who obsess and start multiple posts and get more frantic with each post I will reply to once or twice and then leave it alone.

 

[R9L13026]

[QUOTE) "I don't care what my 5 neurologists think, I want an amateur opinion". (Moderated by Dr. Bluedog.)
...[/QUOTE]

That is to funny.......

I believe they should be pointed to the stickies and be allowed to make their own decision after studying how a diagnosis is made. After all most of the advice given to the thread starter is basically the same.

In a lot of cases they are just asking if our symptoms match what they are experiencing. Its the ones that don't want to listen to our advice or their doc's that I find most irritating. Especially the weight lifters who can no longer bench press their own weight, the runners who can only do 5 -6 miles instead of 10. Most of the youngsters. I really do feel bad for the couple of young people who have been diag nosed.

MHO