Ain't it something...?

[Clearwater AL]

Ain't it something when a DIHALS'er posts his EMG report but... cuts it off at any following paragraph(s) of summary/conclusion and then wants members to read the report for him?

 

[Atsugi]

I think it's dangerous for anyone not an EMG specialist to interpret those reports.

 

[Clearwater AL]

I agree. Too bad we didn't get to read the conclusive interpretations and diagnostic notes that would have followed the EMG findings he posted.

 

[Kosmoskatten]

Oh, I just read this. But that was basically what I said to him.

 

[dalvin]

I never bother to read the reports. Like you said we're not qualified to interpret them so why bother. It's as bad as people posting pics of normal looking body parts claiming atrophy. Add to that the fact that if they don't believe their docs, why would they believe us. Probably 90 percent or more of the dihals posts are a waste of time to read and respond to since they won't listen to 'no, you don't have ALS'

 

[LaurieCALS]

Is there a magic number of times a person needs to hear the same advice before they will accept it? We show DIHALS people infinite patience and still sometimes they won't go away.

Physicians earn their money, lol.

I'm familiar with rendering a diagnosis and not having it accepted. I've explained the situation patiently 5 times over, but still some kind of brain fog sets in. I've also seen anger and one guy simply fainted! That was exciting! I caught him by the way.

I think all we can do is state our case and move on. That's my best advice.

Laurie

 

[skipper66]

I only read them when I'm just trying to kill time. I agree with Dalvin. 90% of them are wasting their time and ours. Why people spend the money then don't listen to the doctor amazes me. I sometimes think some of the posts actually come from the same person or group over and over again. Why someone would be malicious and do this ? I haven't figured that one out. But, I do believe some come on here just to try and mess with us. I am so afraid that someone is going to be on here asking questions instead of going to the ER or calling a doctor in a true crisis. Like thinking they have ALS when they are having a stroke or something along the lines. We need after answering a specific question leave it at that and then send the people on their way to a doctor.

 

[Atsugi]

I am so afraid that someone is going to be on here asking questions instead of going to the ER or calling a doctor in a true crisis.

This actually happens on another board I post to. Some people will report true crisis symptoms and wonder what to do, not wanting to "bother" their doctor or pay for an ER.

I don't think people come here to be malicious. (I hope.) I think a lot of people are just so scared, and medical doctors are so expensive.

 

[Suzannah]

I don't think it's people being malicious, for the most part. Sometimes I read a health anxiety (aka hypochondria) forum because I find it interesting. It is full of posts that read almost word for word like the ones that show up here. Many about ALS, but plenty of other almost identical posts about cancer, heart disease, any esoteric disease you can think of.

The almost absurd resistance to logic that is seen here is seen there, too. The people who make these kinds of posts have absolutely out of control anxiety/panic disorders. The inability to be able to listen to reason isn't stubborness, it's illness. A lot of times it's a manifestation of pretty extreme OCD. They simply CANNOT let go of the idea. It's not that they want to have ALS, it's that their brains literally will not let them believe anything else. Their brains have been hijacked.

Of course, there probably are some people just making a pain of themselves. But I truly believe most of the posts are sincere.

 

[Clearwater AL]

Ain't it great to look at pictures of a healthy plump forearm and hand? Fretting to the max that (whatever) might be ALS. Dents? Where? I even put my 3D movie glasses on... (didn't help). But... I'm not a neurologist either!

Golly.. the pictures even come with ads at the bottom! Un-effin-believable!

 

[LaurieCALS]

Here's a thought, maybe just former CALS should read these posts and answer them. PALS shouldn't have to deal with these issues and waste their time.

 

[affected]

Laurie, Mike and I are probably the 2 most active former CALS, and we do answer a lot of them.

Any PALS who wish to read and answer can do so as this is an open forum, but no one has to do anything with them! Many times when my Chris was with me, I did not read that forum at all as I didn't have the energy, head space or time to do so. Now like Mike, I feel that if I can answer some and save energy for the PALS here, well and good.

I tend to look at a thread, and if others have said their bit I usually leave it alone as I don't like seeing a DIHALS thread get long, it makes me think we are only feeding their anxiety by giving them too much attention.

If I find a new thread, or really have something to add to it then I do.

We strive for a balance - we have to answer enough to keep them contained in there so they don't contaminate our real forum, but we don't want to waste our energy on them as we want to support each other. Fine line sometimes.

I truly feel for the health anxiety cases, but I don't have the energy or resources to help them, and do believe that too much attention only feeds their fires, which I realise are the illness.

I do think that any PALS that get really frustrated there could do themselves a favour and not read them, but the problem is that we want to help anyone who may actually have ALS even if they so rarely start with us in that place. Another problem is that for some PALS it is a slight stress release to 'have a go' there, and I support them in saying what they will. I admit I've had some real laugh out loud moments from some of our PALS more witty comments. Then I feel bad, then I just laugh again..

 

[LaurieCALS]

I'm sorry Tillie. My question was a bit offensive to you and others that catch these types of posts. And you're doing a great job here. So sorry.

 

[Atsugi]

I really appreciate PALS lending their experience to the DIHALS thread, but I don't expect them to.

In fact, I try to look at DIHALS threads several times each day, in the hopes of getting there before our PALS expend too much energy on them. It's my intent to winnow out the anxiety cases from the "might be ALS" cases, so that PALS don't waste their time and energy on posters who clearly don't have ALS.

No offense taken, by the way. I know we're all trying to help, and I appreciate that.

 

[dalvin]

Thanks Tillie and Atsugi. With most of them, if I said anything I'd probably get thrown off the forum. When it's obvious that they haven't read the stickies or keep on with their new 'symptoms' I want to strangle them or slap them up side the head so it's a good thing they're not with in arms reach