I may get into trouble for this one...

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Clearwater AL

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I may get into trouble for this one…

It’s beyond me (me) why in the world someone who has received a
confirmed diagnosis of this rare terminal disease would be reluctant
to share the name of the Neurologist or at least the ALS medical facility
that confirmed his/her diagnosis.

We’ve seen many who post…
“I have been diagnosed with ALS” with no information when, where
who or what ALS medical facility/clinic bestowed their diagnosis.

Is it wrong to just ask a few questions of one these new members?
Who does it offend?

Without any of that… the “Welcomes” post. Being a confirmed PALS
PLS or CALS comes with a degree of significance/reverence over other
members.

*Ok, can someone give me a possible reason why that information
needs to remain confidential within their diagnosis and membership
to this Forum.

Almost put this in the "General Discussion" sub-forum. Maybe it really
belongs there. I can take the heat.
 

Nikki J

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the more information you share the more identifiable you are and it goes both ways. If you know me personally you probably can identify me from all I have written and people may not want to get started down that road. On the other hand people on the internet can sometimes identify you with shockingly little information. There was someone who posted on another forum who said no one will ever find me but they shared their real first name and their state and that they had ALS. Their first name was common and their state large but popping name state and als into search pulled them up immediately ( I knew I was right because we had communicated privately and I knew their last name)

I also think that to many the name of the diagnosing doctor is irrelevant to their purpose here or at least it seems it to them. I think confirming it was an ALS specialist is a service to them because we know people have been misdiagnosed. The exact name should not matter. What is it to anyone here that I see Dr David or Dr Berry or someone else at mgh ( unless you go there and want to compare notes which is better in private anyway)?

I do not believe everyone should be expected to produce their emgs. If we required it it would not deter determined fakers. With enough research anyone can photo shop anything.


are there people who come here and lie? Yes and we have found some and banned them. There are others we have suspected but until they slip up we give benefit of the doubt. And expecting the rest of people who have just had the worst moment of their life to all give a medical summary to a group of strangers on a public forum is not fair
 

Clearwater AL

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Nikki, look at all the current PALS and CALS who have written when, where, who and
going to what clinic. You, Tillie with her Chris, me and many others... maybe one got hacked.
Hell... that can happen more on Facebook (which many members here also participate
in... KimT's site) Look at the members who have posted their faces. Or used to. Golly,
one of our Mods posted her face... did she get hacked? Maybe lucky... according
to what you have replied.

Any web site you sign into has risk. This site here has page where you're asked
for your Email address, birthdate and phone number. Yes, you can leave them
blank. But... I remember many times a while back when someone was given
birthday greetings found from that... where else?

How many times have Mods asked someone to post their EMG reports? Many.

How many times has someone posted the name of their Neuro and were told
they were seeing one of the best (Dr. B) How many times has someone posted
what ALS center they are going and were told it's one of the best. And where to
go for a second opinion.

Whatever... they're now PALS or CALS, "Wanna Bees", Trolls or not.
Welcome aboard.... people are just waiting to reply. Within minutes.

Whatever... it is what it is now. Wasn't this way when I first joined.

Nothing stays the same.

We're all strangers? How many have written that feel like they have almost found
family here because of circumstance (living alone and etc). So glad to share and receive
information, tell their stories. The two active sub-forums are Current CALS and Past CALS
telling their stories current and past. Strangers?
 
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Nikki J

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It is choice to share not something we should demand. I am happy if people feel like family but when you first come here you don’t feel like that

we ask emgs when someone is asking our opinion about their symptoms. Very very very rarely from the diagnosed only if they are questioning something about their diagnosis or if their statements don’t make sense

ok I said my piece
 

affected

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hang on, when I joined I tried to fake that I was in the US (hilariously Nikki knew I didn't talk like I was from there and suspected I was from the UK), I gave a different month of diagnosis and was very cautious about saying anything here because I was so worried Chris would see me posting and take offence (he was so paranoid with FTD)
disclaimer - he never had an EMG, not ever. He was diagnosed, and an EMG date set, and he cancelled it as he as already so advanced he didn't see what it would gain him. I know that diagnosis without an EMG is incredibly rare, but so is ALS and the neurologist certainly expected us to do one, but he had no doubt and was of course right as Chris was gone less than a year later.

I did not become 'Tillie' until Chris was so advanced he was no longer able to browse the internet, and I did not change on my profile that I am in Australia until after he died. It was only after he died that I have become fully open and am happy for anyone to find me personally online if I can help them. I don't have my correct state of NSW showing because this forum stupidly insists you can only have a 2 character state and in Australia we have several with 3 letters.

We had a member who joined and had a terrible thing happen with an ex that tracked her.

I think encouraging people to talk is a great thing, but insisting they give full details is harsh. It always comes out in the wash if they are faking, so I like to err on the side of remembering the horror Chris and I went through in the lead up to and month or two after diagnosis, and being kind.

climbing off my horse as I toss in my 2c
 

Clearwater AL

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"but insisting they give full details is harsh."

No one is insisting.... not me either. But... if you have a confirmed diagnosis
of ALS sharing some information of at least the ALS center/facility that
confirmed the diagnosis is not harmful and some of your story to the
diagnosis just might help others.

My only thought was to bring some integrity to the current real PALS and
CALS.

Or...
"Whatever... they're now PALS or CALS, "Wanna Bees", Trolls or not.
Welcome aboard.... people are just waiting to reply. Within minutes."

Just post... "I have been diagnosed with ALS". You're in... regardless
that you're still in the process of diagnosis and someone just mentioned
ALS and you've convinced yourself... "OMG... it's ALS. Everything I have
found on Google says so." On and on as it may go. Join the Forum.

Whatever... it is what is now.
 
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