So you've joined the ALS Forums

[seaside]

It might be interesting to know how many of the threads started in the Do I Have ALS (DIHALS) forum result in a diagnosis of ALS. Please consider voting in this poll.

 

[HelenL]

Afraid I'd skew those results, I didn't come on here as a member until I was diagnosed for more than 6 months! I always skipped by it, saying "oh I don't have that, it's too rare..."

Famous last words, huh?

 

[kiwisally]

Brilliant!

 

[Alyoop]

Good idea, but I can't see how this will work. Almost all of the people from DIHALS are helped and leave after their concerns about having ALS have been allayed. They won't see this poll.
The majority of forum members who stay, come here looking for support and information after their diagnosis.

 

[olly]

i personally think its good and voted after diagnosis (though not als but pls)if that counts as it still being mnd.
thought there would be more votes for 2 & 3 really.

 

[momap53]

I joined after diagnosis

 

[seaside]

Aly,
You're right about people not returning after their concerns fade, but what this poll may show is how few start in DIHALS and go on to become PALS.

Olly,
In the poll choices I used ALS instead of MND because I thought the term ALS would be more familiar to new comers. Any MND diagnosed should be noted. You voted as expected.

Others,
CALS should vote too. I am open to suggestions on how to improve this poll.

 

[TedH5]

I voted, I may have skewed the poll. I posted after a Neuro told me he thought I had ALS but had not yet given me a confirmed diagnosis. So I said I posted and was then diagnosed but it is not as black and white as that. I only came to this forum after my Dr said he thought that this is what I had. Later he confirmed the diagnosis as did the 2nd opinion. Perhaps I voted incorrectly?

 

[seaside]

Ted,
I think you've done right (in so many ways).

 

[notme]

I think I posted after the neurosurgeon said he suspected ALS (in a letter -- not to my face) His exact wording was something like "highly suspicious for ALS)

And, a year later, I stick around because I've made friends and to help others--and because they still don't know more than "UMN" signs and symptoms.

Now, I think my ultimate diagnosis is going to be PLS sometime down the road--as the only LMN stuff continues to be in my arms,--all UMN in legs. Don't know what lungs are considered--doc didn't EMG the area,, which is just FINE with me.

I'm to the point, I think--treat symptoms and what happens will happen. I spent months being convinced I had ALS. Now, I know I have something, but I don't think ALS will be the ultimate diagnosis.

 

[Toto's Dorothy]

Hmm, I'm from the low end of the GENE pool.

 

[simplysal]

I did the unfortunate thing of typing into google muscle twitching and weakness and ALS/MND ran right down that first page of listing which brought me to you. I'm also interested to see how many DIHALS go on to be diagnosed too. Even if I'm told what I have is benign, I think it may be useful to hang around on DIHALS to assist PALS and CALS in supporting others. You all give so much of yourselves to reassure folk like me so it would be good to help share the load maybe x

 

[Alyoop]

Oh my goodness Toto, I can so hear Scars voice in my head when you posted that! Then he ate a mouse I think!

Seaside, dont get me wrong it's a great idea...just think many would have moved on. I came on the forum after I got told I probably had PLS, then after 2 years started getting better....no one has an explanation. I don't need one. I stick around because I have made such good friends and my day is incomplete without them.

 

[kiwisally]

Come on people, surely more than 31 can bother to vote? Surely it's not that hard, lol....oh well better stop now or the Pope will be after me, again.

 

[Zaphoon]

I came here prior to diagnosis, was given a provisional diagnosis of PLS but after 4 years, it is still provisional, at best, according to latest neuro visit (who doubts it).