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bluedog

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The DIHALS forum has been hijacked by a small cohort of posters whom have rendered the forum useless.

The pattern is that a new poster is immediately attacked and told they have anxiety or some nonsense about having only perceived weakness, and then the rest of the gang jumps in to berate the poster. This, in turn, intimidates Nikki, who shuts down the thread, saying that it has run its course, without the poster’s question even being answered.

This happened to me recently when I asked a simple question. I received no answer, was attacked, and Nikki closed the thread. It also happened to mikef22 today. He has a swallowing problem consistent with ALS, and his doctors have taken it seriously enough to give him CAT scans and MRIs. But the cohort of intimidators immediately attacked Mike, even going so far as to say, wait till the main intimidator hears about this. Then the main intimidator chimed in and blasted the poster to smitherines, and the rest of the cohort then cheered and called the poster a troll. This piranha behavior intimidated Nikki enough for her to close the thread.

Are these people psychiatrists? What qualifications do they have to render a verdict of anxiety to people who have ALS symptoms? They are the only ones talking about anxiety, and then they go on to say that there have been tons of posters recently who have anxiety problems and use that to further fuel their attacks. The only ones who are saying “anxiety” are the intimidators, not the doctors. I’ve read just about every thread in this forum, and have found few, if any cases of someone having real ALS symptoms that turned out to be anxiety.

I have the following suggestions:

  • If you can’t provide an answer to a poster’s question that addresses the question, simply don’t reply to the poster.
  • Nikki, ban the intimidators from the forum so that poster’s questions can be answered.
  • Nikki, step down as moderator if you can’t stand up to the intimidators.
  • Shut down the DIHALS section if people can't control themselves.
 
You might want to check your past posts...


You're right we aren't psychiatrists. You don't have any anxiety. I think you have ALS. WELCOME TO THE CLUB
 
This, of course, does not deserve an answer, but what the hell...

"I’ve read just about every thread in this forum, and have found few, if any cases of someone having real ALS symptoms that turned out to be anxiety." Right, because they don't have "real ALS symptoms"; they have symptoms of anxiety.

"If you can’t provide an answer to a poster’s question that addresses the question, simply don’t reply to the poster." We do answer their questions. We tell them the truth--twitches, perceived weakness, inability to swallow dry cereal, symptoms that come and go, etc., etc., etc. are not symptoms of ALS. And they generally increase as the DIHALSer has increasing anxiety.

"ban the intimidators from the forum so that poster’s questions can be answered." Right, ban the people with ALS from the ALS Forum and leave it open only to people who, for the most part, admit they are anxious or "scared to death" of symptoms that are not ALS related.

"step down as moderator if you can’t stand up to the intimidators." Nikki does a great job as moderator. There are a number of us who would shut down the "anxiety" posts a LOT faster than she does.

"Shut down the DIHALS section if people can't control themselves." Yes, we have discussed this, but only to get rid of the "anxiety" crowd that won't take "no ALS" for an answer. But there are a number of real people with real signs and partial diagnoses from their neuros who we can help. I have written several lengthy posts to people with valid concerns and have received wonderful thank you's from them. When someone has received a dirty EMG and was too stunned to ask the neuro what it all meant, that is an example of when we can truly help those who come to the DIHALS forum for real help. For those who have been told they do not have ALS, or show no signs of ALS, but want to insist they do, we can't help them.
 
I am not remotely intimidated but when the threads degenerate into name calling they serve no useful function to anyone. The OP is able to start another thread if they feel they will get useful feedback. I suspect Bluedog that there are few if any members with ALS who have much constructive advice left for you but feel free to try to ask in another thread if you think there are other answers for you. This thread is not technically DIHALS and is moving to the place where other threads related to the DIHALS problems of this kind have been posted.
 
This, of course, does not deserve an answer, but what the hell...

"I’ve read just about every thread in this forum, and have found few, if any cases of someone having real ALS symptoms that turned out to be anxiety." Right, because they don't have "real ALS symptoms"; they have symptoms of anxiety.

"If you can’t provide an answer to a poster’s question that addresses the question, simply don’t reply to the poster." We do answer their questions. We tell them the truth--twitches, perceived weakness, inability to swallow dry cereal, symptoms that come and go, etc., etc., etc. are not symptoms of ALS. And they generally increase as the DIHALSer has increasing anxiety.

"ban the intimidators from the forum so that poster’s questions can be answered." Right, ban the people with ALS from the ALS Forum and leave it open only to people who, for the most part, admit they are anxious or "scared to death" of symptoms that are not ALS related.

"step down as moderator if you can’t stand up to the intimidators." Nikki does a great job as moderator. There are a number of us who would shut down the "anxiety" posts a LOT faster than she does.

"Shut down the DIHALS section if people can't control themselves." Yes, we have discussed this, but only to get rid of the "anxiety" crowd that won't take "no ALS" for an answer. But there are a number of real people with real signs and partial diagnoses from their neuros who we can help. I have written several lengthy posts to people with valid concerns and have received wonderful thank you's from them. When someone has received a dirty EMG and was too stunned to ask the neuro what it all meant, that is an example of when we can truly help those who come to the DIHALS forum for real help. For those who have been told they do not have ALS, or show no signs of ALS, but want to insist they do, we can't help them.

Much better said than I could, or did.
 
I was just about to answer along the lines of Dusty7, so I will join the alledged cohort and say well put.

What I can add is that I am a DIHALS myself, and I have been advocating several times for a nicer behavior in the DIHALS-section. If you get frustrated and annoyed, stay away from the forum.

But there is a limit.

Posts that stray away from the reason of the forum, to ask about neurological symptoms, are completely counterproductive. A poster that starts talking about finances and estate, for me, it's legitimate to ask if he is a forum troll. It seems unthinkable that someone would be so insensitive that he should talk about wealth on a forum where people are terminally ill.
 
Nikki, do you think that someone who gets blasted and treated rudely is going to happily start another thread to get his questions answered? I think that it would be more productive if, in such threads, you would remind people to please answer the poster's question or refrain from posting. And if they don't refrain, then ban them for a few weeks.
 
Dusty, you can't be serious. Are you really saying that twitching, perceived weakness, and inability to swallow dry cereal aren't ALS symptoms? Of course, they are ALS symptoms. So you aren't telling people the truth. Maybe you should think about not posting on the DIHALS section due to lack of knowledge and just post in the support forums.

Also, an anxiety disorder causing physical symptoms is a diagnosis of exclusion, just like ALS. You can't say someone's symptoms are from anxiety until other reasons are ruled out. Of course, if someone has globus swallowing problems, that is easily identified as anxiety. But with Globus, there is only a feeling of obstruction, but swallowing is normal. The inability to swallow food can have a neurological cause, which is why Mike's doctors are taking it seriously and not saying he has anxiety. Posters are continually telling people they have anxiety when they have symptoms that can be ALS or other neuro diseases. There is a difference.

Of course people have anxiety that post here… they have symptoms of a horrific disease and are scared and anxious. Also, some neuro diseases, including ALS, lower serotonin levels, resulting in anxiety. I'm saying to ban PALS and CALS from the DIHALS forum who are needlessly harassing people, not from the rest of the forum, or close the forum down.

Kosmo, Mike has legitimate concern about a neuro issue. He was talking about finances to show his reason for wanting to know about progression. Unfortunately, you didn't like that and took offense because he talked about wealth in a forum of terminally ill people. What if Mike had said that he wanted to know progression because he had plans to spend the next 10 years de-worming orphans in Somalia? Would you take offense at that because many of the people on the forum can't walk and wouldn't be able to de-worm orphans or live 10 years to travel and de-worm?

The point is that Mike possibly has a neuro issue. That is the point of his post. Anything else that set you off was irrelevant. I didn't find his talk of finances offensive. You did, but didn't keep it to yourself, you called him a troll, and his thread ended up getting closed.

Here's an example. I think that someone who starts every post by saying, "I'm not a doctor, but" is a troll. But I never ripped into you for that because I know that you are going through the same diagnostic hell that I am.
 
We should ban the PALS &CALS.

Wait....you want folks to confirm a self-diagnosis but not anxiety?
 
AfraidButNotAlone,

That's actually a very good point. Touche!

"Wait....you want folks to confirm a self-diagnosis but not anxiety?"
 
This is really a lot like watching Congress.

I do feel for the people that thinks they might have ALS. However, as we all know, diagnosing ALS is a specialty. It most often includes elimitating other possible issues or diseases.

Issues often seem to be anxiety or paranoia.

But at the end of the day all we can really suggest to people is that they see a neurologist or ALS specialty clinic.

I can see where some of us might say "you have reason to be concerned" or even "your symptoms don't sound consistent with ALS in my experience". But we almost always close with you really need to see a neurologist to drill down to the truth.

I do think bluedog may have a point in that sometimes I feel "ALS rage" and likened it to road rage. For me it's easy to get pissed off with someone who is probably dealing with depression or anxiety and likens themselves to me as I trudge my road of ALS destiny.

Just my not so humble opinion :).

Max
 
First of all, Dusty is one of the people here that have really gone to lengths to explain things in the DIHALS section. If he stopped posting there, I am sure a lot of people would get a lot less answers, which would be sad. Because that section is kind of relying on the kindness of the PALS and CALS to share the knowledge and the experiences they have. And I think you need to remember bluedog, that this is not a forum created for DIHALS.

But apart from that, "the truth"? There is no truth here, there is only second guessing. The only truth you will ever hear, is from your neurologist. So sure, noone here can diagnose anxiety, then again noone here can diagnose ALS or any other disease for that matter.

And yes, Mikes post struck a nerve with me, I agree, and I should not have reacted so strongly. I felt like it could be a post by an internet troll, but fair enough, if it was not, my sincere apologies.

I understand that people come here worried, looking for whatever answers they can get. What I don't understand is; if someone tells you; that does not sound like ALS, most of this could be anxiety related. When you are not a little bit happier then, why is your stress not a little bit alleviated?

No I do not think that people should be met with irony, scorn or snappy remarks in the DIHALS section. I do not think you should post there if you feel upset or annoyed. But bluedog, take a moment to think about why the DIHALS section is available. And think about why there are answers given at all.

And, there is an abundance of anxiety posters in that section. I will continue to suggest counselling when I see no reason for their fears, because I want to help. But I am no professional, just an ordinary person giving my two cents.
 
I am going to chime in here...being fairly new to this forum I understand and agree somewhat with the OP, as well as the rebuttals.
I have been part of many forums, they all have their specific quirks and "keyboard badasses".....that being said, this forum has a different dynamic than any I have encountered.
The syndrome is generally the same with new posters seeking specific answers to their questions. These people are scared and panicked by what they read and have heard....and are seeking answers and confirmations about their symptoms. They are ignorant to the purpose of this forum......thinking that all forms of MND have the same symptoms, thus seeking answers. They don't understand that the very nature of these diseases are somewhat similar, but very different....we all have different time lines, and rates of deterioration.
I know understand the nature of the DIHALS, both from their perspective, and the people who have ALS and are just plain annoyed by the ignorance of the DIHALS.
The moderation on this forum is very fair, and make an effort to keep things civil IMO.
Perhaps a better way, for those who are annoyed by the DIHALS, is just to politely ignore them....or direct them to information and stickies that give the knowledge!
On a closing note, why be sarcastic and mean spirited, when you can just avoid a post altogether?
These are my opinions......I have encountered a vast number of really good people on this forum......and have felt the sarcasm as well.
One thing is for sure, we are all gunna DIE.....some just faster then others...that is the common denominator!
 
>or direct them to information and stickies that give the knowledge

Thanks, Mark -- I think this is a terrific suggestion ...

Nikki, why don't you (we?) compose a DIHALS sticky that summarizes what we are alway restating in different ways:

1. ALS is tough to diagnose
2. If you are really concerned, see your Dr., arrange to see an ALS neurologist, etc
3. Be aware of stressing out, anxiety, find a support group to go to to discuss these issues
4. Be respectful of the PALS & CALS here while you may be getting warm, they are already in the fire (better spell out PALS/CALS)
5. <other thoughts here>

Then we can easily/gently/calmly hand out a link to the sticky and (hopefully) reduce the flack.
 
It is pretty much all there already in the stickies composed by our late lamented friends Allen and Joel. I suspect few read them unfortunately. If you want to compose a new thread for a possible sticky please do. It is a sticky problem indeed!
 
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