So very sorry...

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

So very sorry...

Postby Anjel » Fri Apr 23, 2010 7:27 pm

I didn't realize that the website was a special club. Anything I have ever posted on ANY site, some one there tried to help or at least have a few kind words. Just got this really bad news fast and all at once. Just needed to hear I wasn't alone. Wow, I don't think that worked out like I thought it would. Thanks for the kind "generalized" message so I didn't even receive a notice that anyone responded. Hospitality? Thumbs up!
<div><strong><em><u>Just Angie...</u></em></strong></div><br />
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Postby Vhoenecke » Fri Apr 23, 2010 7:42 pm

I'm sorry, I don't really understand.
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Postby Algis » Fri Apr 23, 2010 7:47 pm

Your first message was posted 15 minutes before...

Maybe it takes some time.
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Postby Salvatore24 » Fri Apr 23, 2010 7:58 pm

You've overreacted. No-one hangs around these forums all day waiting to answer questions from new members. Don't be disappointed if you don't get a reply within 15 minutes of posting a new topic. Your other post is very vague in what you are asking us. Do you want our opinion if you have MS? CCSVI?
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Postby Johnson » Fri Apr 23, 2010 8:09 pm

Algis wrote:Your first message was posted 15 minutes before...

Maybe it takes some time.


I count 11 minutes...

Angie,

It's not a special club. Really.

Please start with the stickies at the top of the page - especially the 64-odd page introduction to Chronic Cerebro-Spinal Venous Insufficiency (CCSVI) - click here. These two links will give you an understanding of what CCSVI is in relation to MS.

Be sure to read Newbies Please Visit here first
too. You will quickly grasp what is happening.

You mention Reynaud's in your initial post, but nothing about whether you have any diagnosis of anything beyond looking up symptoms. Don't be freaked out. Go to your doctor. Find out what is up. If it is MS, you are "lucky" - because there is hope of effective treatment for the first time in 1,000 years. But please consult physicians, as any number of serious afflictions can be causing your symptoms. CCSVI and MS are certainly serious, but there is bright hope, so do not despair.

Welcome to the forum!
My name is not really Johnson. MSed up since 1993
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Postby ndwannabe » Fri Apr 23, 2010 8:26 pm

(((Anjel))) I am off to read your post. This is not a club. This is a bunch of ill (some very ill) people who at times don't even have energy to post.

To everybody - "overreaction" is a middle name for at least half of us, no?

Peace to all!
Last edited by ndwannabe on Fri Apr 23, 2010 8:54 pm, edited 1 time in total.
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Postby Algis » Fri Apr 23, 2010 8:43 pm

ndwannabe wrote:(((Algis))) I am off to read your post.
:?:

Just trying to cool things down here; don't shoot the messenger :?
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Postby ndwannabe » Fri Apr 23, 2010 8:54 pm

Anjel, Algis, who's counting :lol:

Sorry, I meant to say Anjel.

************************

There. All fixed.
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Postby Johnson » Fri Apr 23, 2010 10:41 pm

ndwannabe wrote:who's counting
.


I'm just being a smarty-pants... as usual.
My name is not really Johnson. MSed up since 1993
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Postby Loobie » Sat Apr 24, 2010 3:11 pm

Oh my, is someone a little sensitive? Sorry I did not sit hands poised over my keypad, oh wait, I had to work and wasn't online 24-7. I'm sorry I'm being smarmy, but one thing we MS'rs can't do is engage in pity and woe is me parties. You should have realistic expectations and not be so self centered.
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Postby Johnson » Sat Apr 24, 2010 6:04 pm

Angie has not come back, or if she has, she has not responded.

I guess she wasn't that desperate. I responded (quite nicely, I thought) less than an hour after her snit, yet she has not returned.
You should have realistic expectations and not be so self centered.

Maybe a few years of debilitation will inspire some graciousness.

You are welcome, Angie - even if you are not thankful.
My name is not really Johnson. MSed up since 1993
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Postby CureIous » Sat Apr 24, 2010 6:17 pm

The sympathetic side of me understands the whole feeling of being lost in the fray. I think it would help if the newbies understood that we get a LOT of one-time or two time posters in here. I've seen some that come in, ask "how do I get the surgery", then never return.

There's no pecking order, special club, just sick people helping other sick people get better as much as we can help, that's the crux of the site. We rally around helping people, but in this age of the net we are slowly training our brains to be instantly compensated "google-style", when real life is nothing like that. Everyone (including me) wants everything instantly. Instant messenger, instant response, what's the hold up it's been like an hour already!

We are not a social networking site, that's what Facebook and Myspace is for, although that does at time happen here, this is an information depository and all newbies should spend at LEAST a few days perusing before asking questions, my opinion only...


Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby ndwannabe » Sat Apr 24, 2010 6:46 pm

Johnson wrote:
ndwannabe wrote:who's counting
.


I'm just being a smarty-pants... as usual.
:lol:

I wanted to ask you - where do you get such cool avatars? Do you create them yourself?
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Postby Algis » Sat Apr 24, 2010 8:23 pm

I wanted to ask you - where do you get such cool avatars? Do you create them yourself?


When you go to your profile; you can upload a resized picture/drawing of your choice. My avatar was designed by my daughter :P
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Postby ndwannabe » Sat Apr 24, 2010 10:23 pm

Algis wrote:
I wanted to ask you - where do you get such cool avatars? Do you create them yourself?


When you go to your profile; you can upload a resized picture/drawing of your choice. My avatar was designed by my daughter :P


I know how to insert them. I meant where does he get the designs. I love his present one and I liked the one he had before.
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