Concerns about DIHALS subforum

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Teppo, I think we all consider you a friendly and responsible poster. Fear no ejection, ever.

I’m sorry to hear you had to quit such a long career in medicine. That is always really very tough. It happened to me when I worked at the VA. What was your training and specialty?

When I was a “patient troubleshooter” at the VA, a lot of veterans would call up angry at the VA. Almost every one of them was fully justified. VA had screwed up something. And often also screwed up the correction. Poor training and overwork led to a lot of errors and bad attitudes.

When those vets called my office mates and were cursing mad, my office mates would hand them off to me. I would listen, sympathize, and stick with them until their problem was truly fixed and the veteran was finally satisfied.

In short, I got the tough cases—many of them had PTSD or were seriously emotionally damaged, some were suicidal, a couple had a red flag in their record that said “This patient is HOMICIDAL. Do not be alone in a room with them.” But I was able to help thousands of vets+ calm down.
Those vets belonged there and I was never, ever rude or dismissive. However, when a DIHALS uses up a great deal of our time and upsets our PALS, they do not belong here.
One thing that happens is this: A PALS will look in the DIHALS area, maybe out of curiosity or perhaps hoping to help someone. Then they see a DIHALS post that upsets them terribly. Sometimes to tears. Perhaps even makes them want to leave our forum—a forum that is therapeutic for them.

That happens often. Personally, I might not understand exactly what they’re upset about; I don’t have the PALS perspective. But it’s important to the PALS, so it’s important to me.

When I see a DIHALS posting things that can hurt our members, I will probe to find out what it takes to get that DIHALS to leave. That’s when I stop nursing and start policing. Sometimes it gets rough.

Teppo, and all concerned: I’ll do my best to address DIHALS without being dismissive or rude. Thanks for the feedback.
 
I think that Nuts puts it very well indeed. When I said that people here are themselves struggling, I did not mean that personal hardships are an excuse for rudeness. I do think that people who have been told time and again by Doctors and by Forum members that what they are describing is not or is highly unlikely to be ALS and persist here do sometimes indeed need "tough love". If I were to sit and search and pull up all the posts in DIHALS made by people who have had multiple EMGs that were normal, who have been told by Doctors there is nothing serious going on let alone ALS I would be sitting here all day. Some are so insistent that they actually end up being having their threads closed. PALS and CALS simply are NOT here for that, and rude works both ways. That behavior is motivated by fear/anxiety but it is still very rude.

I suggested at one point that another forum be made for people who have been told by a Doctor that they may have MND/ALS because I think that for one thing, that all by itself is a devastating game changer. I am not sure at all that people in that situation should be in the same area as the twitching pinky crowd. If that sounds dismissive, it's because about 92% of those posters are diagnosed with nothing at all - or something benign I firmly believe. Our primary service to them is to point them to the stickies and let them know that the EMG was not done "too soon" or "in the wrong spots". AS it should be, in my opinion.
 
I have read this thread and feel strongly that most, if not all, initial posters are treated with respect, kindness and understanding after an initial post. If I occassionally read something that feels different, I immediately look at the #of posts a DIHALS has under their name. In most, if not all, cases that number indicates that they have posted before, under another thread, sometimes multiple threads. In these situations, I feel that a little tough love is necessary. Allowing continued posts when the person clearly doesn't describe ALS symptoms, only fuels fear, paranoia and anxiety. And yes, there do seem to be alot of trolls out there. Lately there have been a few posts that state post-nasal drip as a fear for early ALS symptoms. That is baffling and frustrating to say the least.

So, I will be cognizant about responding respectfully but when DIHALS continue to post, particularly after being told by doctors that they don't have ALS, I will encourage them to seek support elsewhere.
Tracy
 
I deleted Mocha1's post above because persons who are not PALS or CALS are not allowed to post outside the DIHALS area. On the other hand, the poster IS Canadian, and everybody likes Canadians, so I’ll answer his/her post. Here it is:

____QUOTE from Mocha1:

Great responses and of course as I read them I realized the following:

1) you are not doctors and cannot and should not offer diagnostic services. I have read many posts where you have been very helpful to people posting. Even reading EMG reports - that is truly impressive. Perhaps I generalized out of frustration... and I have also read some DIHALS posters that are in serious help in the anxiety department.

2) I had (and continue) not considered the troll aspects. I am an open honest person, and naively expect others to be the same when posting to boards like this. It doesn't even cross my mind that people would want to mess around with this. However, I am active on a board called anxietyzone.com (which seems to be down right now unfortuanately, and there are definitely trolls there. I agree that the work to keep these trolls at bay would be time consuming and frustrating.

3) I would also like to say that the messages you do give the majority of people are constructive and consistent. Anxiety can manifest itself in so many physical ways. Those that come here with it may not have experienced it before and are convinced that they are dying. I have fairly high health anxiety, which is managed with medication, but also by reinforcing the messages that you good people put out there: failing not feeling; clinical weakness not perceived weakness; trust your doctors; twitching is not diagnostic of anything; etc. All excellent advice. I honestly wish some Dr's could be more empathetic sometimes. I cringe when I hear the stories of dismissive dr's.

4) With respect to my earlier comment about getting rid of the DIHALS forum, I said that in frustration. It has helped me tremendously. Like I said before, I have health anxiety, but I'm also an engineer by trade and like numbers. What I've also seen is countless posts of people like me that present, run through a process, never to return vs the very few that unfortunately stay and change. From that perspective it's very very helpful. I only wish more people that came here with initial concerns could follow up with what they found out, as it would be instructive to the forum.

I've said enough! Take care all, and happy holidays.

_____________END QUOTE
This applies very well to the DIHALS discussion. Instead of "doctor" just substitute the PALS CALS, or MOD who answers in the DIHALS area.

Some doctors need a personality injection. A lifetime of being the smartest one in the classroom might make them think differently than you or me.

On the other hand, here is another perspective to add: I think most doctors appear dismissive when, in fact, they’re doing the only thing that makes sense in the larger perspective.

I saw the world of doctors up close for 20 years. Here are the world’s brightest people, with an incredibly deep education, spending 15 minutes in a room with a patient who usually has a “quick-sick” easy problem. In the next room might be a patient whose life, happiness, or livelihood depends upon the doctor’s expertise. Perhaps the health of a school depends upon curing Patient Zero in the next room. Then the guy with the easy problem refuses to believe the doctor and wants to argue with her….

I think this is one big reason that many doctors learn to “provide care, provide education , then leave.” It’s not productive to argue with the Pt or try to persuade them, nor is it fruitful to try to teach the patient all the medical training, biology, and chemistry that went into reaching the diagnosis.

Besides, is the neurologist trained in psychology? No. So refer the pt and end the appointment once you’ve given the patient the benefit of your neurology training.

From one point of view, the doctor/CALS/PALS/MOD lacks empathy or is dismissive. From the next patient’s POV, the doctor/CALS/PALS/MOD is on time.

I’m not arguing with the poster, simply adding another point of view.
 
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Edited. On second thought... I'll stay out of this one. :)
 
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I don't have much to add here as it's been covered in depth, but wanted to pass on a thought.

In looking at the sub-forum title, might changing it help? For example, calling it The Waiting Room (or something to that effect), vs. DIHALS which may imply people responding can provide a diagnosis.

In all honesty, that section drives me batty and most days I have to step away from the keyboard.
 
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Yes, we have talked about changing the title before and have failed to achieve consensus on that point. I agree that it is suboptimal and creates false expectations.

Teppo, no one has ever posted that full paralysis even of a single muscle is necessary (or sufficient) for a dx.

Mike, I don't think we can equate a medical degree w/ being brighter than anyone else, though there are some very intelligent people in that profession. In fact, I know we can't, for I used to work in the medical school admission process.

Best,
Laurie
 
I've been blessed, Laurie, in that all the folks I have met who have the giant diploma on the wall have all been really very outstanding people. Admittedly, you've seen many more than I have.

This is the view I came around to over the past couple of decades:

That kid in HS who effortlessly made straight As, played an instrument well, medalled in gymastics, and was also surrounded by friends--just for fun she enrolled in "13th grade" in Germany. She double-majored in college and still made A's without being challenged. Her first challenge was in med school, and she did well there.

That's the woman I met in the service and married. I was equally impressed by the doctors she referred me to, and by the doctors we met after hours. Well, I did see a GP in an office along a highway in the high desert of California, a true GP without boards or residencies, with a diploma from Guadalajara; he might not have been too impressive.

Like so many other things, I've been blessed.

Next topic: DIHALS or BIALS or XYZALS, I'm flexible. As long as the undiagnosed folks don't wander around posting on the rest of the site, I'll be happy whatever it's called.
 
I have observed a noticeable difference in tone of replies to those who have legitimate concerns. Lenore's original post is one I specifically remember- it was obvious reading it that something was up and I don't remember reading the same dismissive types of comments on her thread, it seemed to me (and of course it would feel different to you, Lenore) that the responses were all quite serious and supportive answers. When A 19yr old complains of an eyelid twitch it's a very different manner. I had one exchange with a real jerky guy shortly after we received our diagnosis and his tenor and aggressive responses dictated how to respond to him. Some people just want to be told they have ALS, I don't know why.
Vast amounts of the internet is not friendly or nice, in particular chat boards and forums. That doesn't excuse poor behavior of course, but complaining about someone being mean online is just par for the course.
 
I have observed a noticeable difference in tone of replies to those who have legitimate concerns. Lenore's original post is one I specifically remember- it was obvious reading it that something was up and I don't remember reading the same dismissive types of comments on her thread, it seemed to me (and of course it would feel different to you, Lenore) that the responses were all quite serious and supportive answers. When A 19yr old complains of an eyelid twitch it's a very different manner. I had one exchange with a real jerky guy shortly after we received our diagnosis and his tenor and aggressive responses dictated how to respond to him. Some people just want to be told they have ALS, I don't know why.
Vast amounts of the internet is not friendly or nice, in particular chat boards and forums. That doesn't excuse poor behavior of course, but complaining about someone being mean online is just par for the course.

Yes, I felt that exactly. Come here saying the Doctor is reacting to your husband's EMG with a "let's deal with this right now" attitude and you get supportive and respectfully replies. Pinkie twitchers will be referred to the stickies and sometimes rapidly given the shove off if they persist, and I am not at all sure that is so wrong.
 
A reminder: please don't quote or bold large text chunks as many of our PALS find scrolling/reading difficult. Thanks!
 
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