Old 10-11-2015, 11:56 AM #31 (permalink)
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Default Re: Dihalers

Kind of nothing to do with DIHALS, but I just had to mention it.

Today I went for a very long ride on Henry. I was hoping the wind would eventually blow PLS out of my system I think...

Anyway, coming past St Georges beach, a bunch of teenagers were having a very heated discussion about walking to the foreshore (another beach, about 2.5km away).

They were complaining incessantly about how far it was...it's actually a beautiful walk. The footpath goes all the way along the beach. A walk I've done many many times.

I so wanted to stop and shake some sense into them. At least you CAN walk...

Reminded me of a common complaint of DIHALS of not being able to do as much as they used to.

It can be scary I know, I was in total denial for two years.

But I also think that sometimes we shouldn't have to tread carefully (no pun intended...well, maybe...) but shake some sense into people. Maybe that's what they need?

I don't know. I need to stay off DIHALS. Does my peace of mind no good whatsoever.

Good luck to those of you who continue that good work of reassurance.

God bless, Janelle x
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Old 10-11-2015, 09:28 PM #32 (permalink)
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Default Re: Dihalers

Janelle, I go in phases. Sometimes I can't deal with them, but then I calm down and feel like I should pitch in now and then. I do try to stay away when it's obvious that I'm irritated, rather than feeling helpful.

So, how did the teenagers take your wake-up shake-up?
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Old 10-12-2015, 12:28 AM #33 (permalink)
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Default Re: Dihalers

Hi, Suzannah...thank you for giving your thoughts on what it was you thought I was trying to say to you. You interpreted my message to you exactly as I meant it. I'm glad you knew what I was trying to say. My wording may have made it confusing. Best, Laura.
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Old 10-12-2015, 01:25 AM #34 (permalink)
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Default Re: Dihalers

I thank everyone with the patience they showed me. My issues were with advocating for myself with medical professionals- and I look back and cringe a bit. Sorry.
I will try to keep tabs on the DIHALS section and put my two cents in when I can. Lord only knows I've been through the same process of "diagnosis", and know how many specialists and doctos' visits are required sometimes. Hitting the intertubes and joining a rare disease board before seeing an actual real live doctor is kind of backwards.
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Old 10-12-2015, 11:04 AM #35 (permalink)
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Default Re: Dihalers

I often wonder if I'm qualified enough to offer the kind of advice needed to answer DIHALS.
It seems my main qualification is patience.

Sometimes I think that DIHALS should be answered by only the most medically knowledgeable people, but then I'm not sure about that at all. Worth discussing?
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Old 10-12-2015, 11:21 AM #36 (permalink)
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Default Re: Dihalers

Since, to the best of my knowledge, no one posting is a neuromuscular physician we should probably only be answering in generalities. Even a neuromuscular physician could not definitively diagnose or rule out in this setting.

But it is reasonable to point out twitching is common and non specific, that a lack of clinical weakness points away from ALS, that if a doctor has told them no ALS they should believe it. If they ask about something as an ALS symptom it is fair to say not in my experience, not like anything I have heard other PALS mention. That sort of thing
It is natural to want to say. Not ALS! Especially when they keep pushing or when they say something that is patently ridiculous. I wish we could rename the section. I have asked but no luck so far
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Old 10-12-2015, 12:20 PM #37 (permalink)
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Default Re: Dihalers

In addition to the things Nikki suggests I would also suggest teaching them that besides being very rare, the diagnosis of ALS can take many months for trained physicians to make and usually involves a fairly specific combination of symptoms, not just a twitch or a tingle. While the web has helped the spread of info it has also left the impression that there is enough medical knowledge out there to make diagnosis easy for just about everything. I've read the forum for nearly a year as a lurker and the thing I've noticed since the beginning is the folks coming here to find out if they "have it" are unaware how difficult the diagnosis really is. Stressing that might help when dealing with them (if they'll listen). I have watched many family and friends go through ALS and the only "easy" diagnosis was one who waited so long to see the neuro most of the PALS and CALS here would have seen it too. And reminding the DIHALS'ers that reading a PALS post looking back a couple years and connecting the dots of their personal onset is historical only and not a forecasting tool.

Bless all of you who have the patience to answer their questions and anxieties!
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Old 10-12-2015, 12:33 PM #38 (permalink)
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Default Re: Dihalers

Agreed. Though the converse is not always true. Ruling out many of these cases should be easy and well within the abilities of a competent internist or family practitioner. I do not like to encourage these people to waste medical resources. anyone else have to wait to get onto the neuromuscular physician the first time?
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Old 10-12-2015, 12:54 PM #39 (permalink)
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Default Re: Dihalers

I completely agree that the name should be changed. Do I Have ALS? Well that simply invites everyone to come on and ask. You all have done wonderful work with the stickies but for the anxiety ridden, they will never take time to read them. I think a more appropriate title should be "In The Process Of Diagnosis". I think that would help folks who have already seen a neurologist and are still in limbo. That may weed out "my pinky feels weird" posters.

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Old 10-12-2015, 01:11 PM #40 (permalink)
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Default Re: Dihalers

As I said I have asked for a change. I thought questions about testing and diagnosis. Unfortunately I do not have the power to rename. The name of the subforum was determined long before I came here and the people who had input are almost all dead
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Old 10-12-2015, 02:44 PM #41 (permalink)
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Default Re: Dihalers

I'm glad that the DIHALS can easily see the "Do I Have ALS" subforum bright and bold right up top so they are attracted to it. I like the name, and if anything, I would put it right on top.
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Old 10-12-2015, 04:31 PM #42 (permalink)
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Default Re: Dihalers

When I came on the DIHALS, I wanted very much for the replies to be "it does sound to us like your doctor is barking up the wrong tree," but, I think hearing "you may have cause to worry" at least helped me prepare for hearing that based on the test results it was probable. I am very grateful you guys have that forum. And I just want to say thank you all for the huge amount of patience you all have in dealing with it all!
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Old 10-13-2015, 02:10 AM #43 (permalink)
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Default Re: Dihalers

Are we able to ask, as the doctor Nikki mentioned says, not to use big words, particularly if they haven't seen a neurologist?

I could say to you I get rest tremors that result in clonus of my foot.
What a DIHALS should say is
It's like someone is pulling a lackey band up the inside if my leg. When it's released my leg goes crazy and my foot does this psycho wavy thing.

When they have started with techno terms, they've already diagnosed themselves...you know?

I could tell you I have atrophy in my calf. It's actually cellulite...but you know? If I'm all worried I could convince myself it's atrophy.

I surely hope I'm making sense. I've never really been fond of the jargon because nobody on the planet speaks like that on a daily basis.

God bless, Janelle x
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Old 10-14-2015, 01:25 PM #44 (permalink)
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Default Re: Dihalers

We're seeing numerous repeat visitors.

There are two problems with this:
1- they're ignoring the multiple thread rule
2- by not checking their previous threads we're enabling them

The most recent one is the "31 year old black male". I responded to him last night, pointing back to his earlier post, and he deleted the whole string and then reposted.

Check the number of posts and review their earlier posts. If they're still open, that's where they should be posting.
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Old 10-14-2015, 01:46 PM #45 (permalink)
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Default Re: Dihalers

To be fair he did not delete the thread last night I did as I did the second time he started a new thread he then posted on the original thread. My general policy is to delete multiple threads twice if any more they get banned. This is in the big sticky ( though not the exact number) and in its own sticky. I agree best to ignore , not answer at all and report. Multiple threads are both lazy and inconsiderate. Before you report the multiple thread though make sure there is an open one from them to post to.
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