Dihalers

[Nuts]

OK, what's going on? Why the big upsurge in Dihalers?

 

[Green Queen]

Do you reckon the more prominent in the media the more people have something to fear? Not that it changes symptoms etc, just another thing to latch on to?
I never even dreamed of searching for answers on the Internet. I let the trained professionals answer all my questions.
When it was 99% sure it was PLS then I searched for a support group.
That's it.
I think Dr Google needs his licence revoked.
God bless, Janelle x

 

[Nikki J]

Colder weather? Back from the beach? Seriously I thought we had been having a lull. And sadly we seem to have a couple of people right now who could turn out to have ALS. At the very least if they are reporting accurately they have some significant issue besides anxiety

Off the subject a bit as I don't think we have this right now but have in the past I stumbled across a new to me term last night. Munchausen by internet. Munchausen syndrome of course refers to people who make up or create medical problems to get sympathy and attention. We know and have experienced on this board there are people who do this on the internet. Now we have a name for it!

 

[Nuts]

Munchausen by Internet---That's perfect, Nikki!

 

[cheerleader]

Suspect we are all a bit irritated by the "ALS wannabes " after losing so many pals lately. I sometimes want to write " any PALS here would gladly let you have their ALS if you insist on it!" Especially irritating are the "twitchers" who claim they have read the stickies and various posts. Nikki, you are so kind- and of course correct that there are a few who may actually have ALS but---

 

[fionae]

I have definitely noticed the big upsurge as well. It is extremely depressing, in so many completely different ways, and for so many completely different reasons.

 

[Green Queen]

I think some of is lack of understanding of symptoms.
People use words like atrophy and fasiculations like they are part of every day vocabulary. We know that fasiculations and twitching are different because of research and first hand knowledge. I had to get a doctor to explain quite a few of these words to me.
J x

 

[mpnatx]

I remember when I first found this site and posted in the Dihals section. I had posted after I first heard the ALS acronym after several appointments and tests with various doctors. I was not yet officially diagnosed.
I just went back and read all the threads I had posted at the beginning. It brought back memories of how little knowledge I had for this nightmare I was about to embark on.
The members in this forum were at times intimidating and informative. Above all, you guys were right to the point, empathetic and were extremely helpful steering me in the right direction. Invaluable.
After I was officially diagnosed, I moved myself to the newly diagnosed section where I was welcomed with open arms and very kind and heartfelt reception.
I hope I can one day give back to the group what you have given me. For you have helped me towards acceptance through understanding.
The loss of many PALS have saddened me beyond words. But even these events have helped me prepare for my own future and the future of my family.
To all the PALS and CALS, I am forever grateful for your guidance and acceptance.
With love and sincerity,
Marty

 

[Green Queen]

Very well said Marty.
It is extremely sad when Dihalers get to stay.
God bless, Janelle x

 

[zoohouse]

Ok I am really tired, so at first I couldn't figure out what Dihalers was. I thought it might be a new type of BiPap, or ventilator, then after a bit of reading I realized it was Dih als ers. I was just about to google it, snort.
Paulette

 

[fionae]

Hi, Paulette...Right there with you! And I wasn't even SUPER tired yet at that point when I first posted. Tired, yes, and not too sharp, but NOT SUPER TIRED like now! Your post from just now made me chuckle, because you described my first thinking to a Tee! Laura.

 

[affected]

Munchausen normally project illness on to others close to them.

I seriously had a SIL with this - the crap that went on with her daughter was incredible.
Between her, my brother and the daughter, someone was dying of something horrific constantly and luckily only one was miraculously ill at any one time.

But we do seem to get surges in there and it's so hard to treat every one of them as an individual with real concerns rather than just yell at them to bugger off.

I love how Mike handles them

 

[Nikki J]

That is Munchausen by proxy Tillie and can be particularly horrible as a parent often produces illness in a child by physically harming them. Those munchausen by internet people I read about sometimes presented themselves as ill as happened here but sometimes it was a proxy on the internet ( sick,dying child).
The whole Munchausen constellation is very very sad and the in person forms very dangerous.

Marty I remember well when you had to move from DIHALS. We are glad to have you but wish you did not have to be here
Janelle the jargon is annoying. I see one researchers who absolutely refuses to accept a patient using a medical term to describe a symptom which is probably a good thing

 

[Atsugi]

Thanks for bringing this subject up, Nuts. It is only from these threads about DIHALS that I get to understand the DIHALS phenomenon. They need help for something, but I don't want to encourage them to stay too long, lest we become inundated by general health questions. That would dilute our efforts for CALS and PALS.

Nikky mentioned that we have a couple of serious DIHALS who just might get a dreaded diagnosis soon. I saw them, too, and I was shocked and saddened. It seems like we went years without a serious PALS coming through the DIHALS section, and then all of a sudden, several appeared. I hope they come back for support. I hate to think of people going through ALS without a great deal of help.

Thanks for the compliment, Tillie. You know I do it for you.

Nikki pointed out the danger of using medical terms. I realize that a word can have many subtle connotations and denotations beyond what I know. I might appear smart by using a medical term, but also be doing unintentional damage. So I try not to use medical terms.

I know how important and helpful the members of this site were to me when I needed it. And now, honestly, I think it's an even better site now, with really positive and helpful and knowledgeable people. My thanks to all of you. I'm proud to be a small part of this team. --Mike

 

[affected]

Thanks for the compliment, Tillie. You know I do it for you.

Oh that made my day!