NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)
-   -   need for more profile information?? (https://www.neurotalk.org/myasthenia-gravis/129567-profile-information.html)

cjrusso 08-04-2010 06:11 PM

need for more profile information??
 
I have been on this forum for several months and noticed one thing with 'NeuroTalk', most people have nothing in their personal profile. I was on another MG forum in the UK and the 'chairman' chastized everyone for not haveing a profile and I agree.
.nothing too personal but at least :
First name,
Country and town: USA, Franklin lakes NJ
a short naritive of your MG story:
when diagnosed
what medications
what reatment - IVIG, Thymas operation, etc
any info on how you are being teated.
I always click on the name when I see a comment, but for the most part on this forum I see nothing, just think it would be helpful for everyone... as I said the UK forum people always prvided some info.
Chris

Jomar 08-04-2010 07:06 PM

Hello,

We don't require anyone to fill out their profile section, we leave it up to the member to put info or not.
But many of the other forums here do have a sticky thread for diagnosis, history & other info a member may want to post.

I'll start a thread like that for this forum and sticky it also - so look above for the Green circle icon with an arrow.
here is the link to it - http://neurotalk.psychcentral.com/thread129569.html

AnnieB3 08-04-2010 11:41 PM

Chastised, eh? Isn't that what someone does to children when they've been bad? ;)

Some people, like me, are more guarded about their personal information. I don't believe anyone has a "right" to that information. I share as much as I feel comfortable doing on the forum, as I'm sure others do.

That's a good suggestion, JoMar.

Chris, maybe you might do a post asking people to share stories with you, if that will help you. It does help to hear how other people cope with MG. Is there anything in particular you want or need to know?

Annie


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