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Nikki J

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PALS
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04/2014
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Or whatever holiday you prefer?
I have brought this up before and it is being raised again on DIHALS
Please if you can not be civil do not post in DIHALS. If you think they are trolling ignore them. Do not give them the attention they crave.
If you think they are hypochondriacs, lazy etc again ignore or be polite. There is nothing wrong with saying please read or reread the sticky or even after concerns are addressed suggesting that there might be a better place for voicing their continued issues.
It is true that they have no concept at all of our daily struggles. How could they? For you who are SALS did you before diagnosis?
ALS is called the nice person's disease. Please don't make that part a lie!
I wish I could give time-outs specific to DIHALS but I can't
Thank you all. You know I love you but I don't always love everyone's behavior!
 
Sorry Nikki, didnt mean to stress you. Was feeling good this morning and thought I could respond positively....
 
You were not impolite! No issue with you, my friend
 
oops sorry to nikki i shouldn't of gone there. trust me i try not get in to those threads any more.
 
People who are too polite in life sometimes get kicked in the teeth in my opinion. Respect needs to be earned in my opinion. Yes, I will try to reframe from making snide remarks to the posters. But, I would appreciate if more of them would get completely banned or their threads closed quicker.
 
Closing threads is usually pointless as they then have no option but to start another if they have more questions
I am not going to ban someone for being clueless or annoyingly persistent. Multiple accounts and rudeness are another issue. Beky and I have let one or two very rude DIHALS slide recently because we judged they MIGHT have genuine need but most are quite civil even if irritating
Again IGNORE people if you judge they have been answered or are not genuine. If everyone did that the threads would naturally die.
 
Nikki, thanks for this thread. As someone who is still going through the wait and see process (I've been given an Isaac's Syndrome diagnosis for now but have also been told that ALS can't be ruled out in my case until 2-3 years after my initial symptoms started), I've read many posts here, old and new, especially when my symptoms first started. Like many others, I was looking for those with similar symptoms and some answers to questions while I waited for my appointments and tests.

While I read through old posts, I found a number of people who posted in the DIHALS forum with real concerns that were quickly shot down. Many people were told flat out "you don't have ALS" by forum members, even though these members are not doctors. There were some also rather rude comments made to these DIHALS posters. What I found then was that some time later these DIHALS posters were diagnosed with ALS.

One thing I've learned over the past seven months through research and discussing with many neurologists is that ALS presents itself differently in everyone, especially many of the early symptoms.

Please do not take offense to this as none is meant, but I feel as though I can understand firsthand why a PALS or CALS could dismiss those DIHALS who don't have symptoms that they have personally experienced.

I have a sibling who I am very close to that is fighting a rare form of leukemia right now. I have watched the progression directly. I know what their symptoms are like. I remember the day my sibling told me that they had 6 months to live. While I know the symptoms and progression of my sibling's leukemia, I don't know the symptoms for all types, and I would never tell someone concerned about their own symptoms that they don't have leukemia or admonish them for asking real and sincere questions.

Unfortunately I have seen that in the DIHALS forum, and it is unfortunate when the poster who is getting admonished to read the stickies and told they don't have ALS turns out to actually have ALS, posting their diagnosis in the Newly Diagnosed forum some time later.

There are trolls here of course, like any forum, and hypochondriacs who spend way too much time asking the same questions. But, I personally think that there could be a little more kindness and civility in some of the responses.
 
ACRONYC, please tell me which poster has developed ALS after being told "you don't have ALS" by members of this forum.
 
Ditto what Mike asks, very important for us to know this.
 
I would comment that not all who claim a diagnosis are genuine. There are at least 2 in the category that A mentions that have been found to have misstated their diagnosis ( maliciously or not) and naming them will not be productive but I do agree it is not always appropriate to be dismissive. Sometimes it is.
 
Edited... yea, let's do a Christmas Truce.
 
If anyone was ever told "you don't have ALS" by members of this forum, then developed the disease, it would be important to review the case.
 
Nikki I agree I don't want anything that is not productive.

But I occasionally hear this thrown at the forum - that people come to DIHALS, are treated badly, told they do not have ALS, then are diagnosed. I do not know who these are, cannot find any evidence of who they are, and I believe that if this is going to be thrown out as some kind of evidence, then it needs to be backed up or else it's just mud slinging.

Just sayin
 
I in no way meant to be mud slinging, and my apologies if it came off that way. I'm in for a follow-up EMG today (first time I did the tongue and that was not fun) and have been waiting for my results for a while now...probably not thinking or writing my best.

Looking back at my post, I shouldn't have said "many" people were told they don't have ALS and then it turned out they did. From my recollection of my searches, I found this occur to a few people but I also should have mentioned that these posts I found were very old. It's very well possible that they were made by nobody who is currently active on the forums. When I have some time I'll go through my search history and find them if that is considered to be constructive.

However, I have read recent posts of those who asked questions in the DIHALS forums and weren't really treated the best or very fairly (in my opinion) or were dismissed, and then these posters ended up being diagnosed. Some were given answers like "pain does not equal ALS," which from talking to my neurologists is not always the case and is very complicated, depending on each individual. I guess, what I've learned is there seem to be few blanket statements you can make with ALS in the early stages of diagnosis because there is so much potential variation.

There are also recent posts in the DIHALS forum were some are told they don't have ALS. This is just my personal belief, but no matter how annoying a poster is, I don't think any of us are qualified to tell someone this over the Internet.

Anyway, I'm sorry if I offended anyone or made incorrect or inappropriate comments.
 
Not accusing you of mud slinging at all Acronyc. I was just saying that if someone reports there are recent posts were 'some' have been told they don't have ALS and have been diagnosed, I'm not aware of them, so as Mike says it would be important for us to review that. I was more saying that then if the person is discouraged from giving the detail behind the claim it becomes mud slinging. Isn't text a difficult way to get all the meaning behind our words!

Of course neurologists or other doctors have been known to do extensive testing actually seeing people and say it is not ALS and it turns out to be too ...

I did not make any comment regarding the tone of replies in the forum, only about the above.

Thanks in advance for finding out which cases you are referring to.
 
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