The Lupus Forum banner
1 - 10 of 10 Posts

·
Registered
Joined
·
7 Posts
Discussion Starter · #1 ·
Hello
I first came on this site about a month or two ago and put a post in asking about the possibility of having lupus with negative antibodies.
There were 3 very kind replies. I can't find it all on the forum now.
I'm just writing to say sorry for not thanking you at the tim - I got cold feet about putting my personal info out in public. But I really did appreciate your kindness.
I am still no further on, having investigations for other things too with negative tests so far.
It's hard when medical science seems to fail you, even though the doctors are trying to help, which I am lucky about.
I have a look at all your posts from time to time and I find it very helpful to hear what happens to you all and the answers you get. I know alot of you are struggling with worse symptoms than me.
I wish you all the best and thanks for keeping writing even though I am not contributing.
Jubes
 

·
Registered
Joined
·
7 Posts
Discussion Starter · #3 ·
thanks again

Clare thankyou for giving me the previous post link.
I had forgotten I had 6 replies - I think memory is another problem for me....
So thanks to Loopyloo, Maia, cemc, halfpintfl, Katharine, LolaLola who all gave replies.
The idea of a keeping a diary was especially useful.
Best wishes
Jubes
 

·
Registered
Joined
·
301 Posts
Hello Jubes

Hope you are doing well today.

It can take a while for bloods to become positive: mine have only started to show "something" after 6 years of investigations. There are cases of diagnosis without blood work and there are some on this site in that position.

The road to diagnosis can be a long one but it won't be lonely if you allow us to be part of your journey. I am grateful for the support of everyone here as I now feel I am not alone in my travels. I hope we can share the way with you.

Sending love to you

Judi xx
 

·
Registered
Joined
·
7,800 Posts
Hi again Jubes,

I think a lot of us are wary of the internet at times but if and when you feel reeady to post more, we'll be here for you :)

Katharine
 

·
Registered
Joined
·
7 Posts
Discussion Starter · #6 ·
hello again

Thanks Judi and Katharine
I feel your support. Finding it quite hard at the moment.
Take care
Jubes
 

·
Registered
Joined
·
7 Posts
Discussion Starter · #7 ·
ps

I meant to say also that I read the statistics from the expert Dr interview on this site about ANA negative lupus being only 3% and only in very certain circumstances, which I think I probably don't fit, so maybe I'm on the wrong website.
Thanks anyway
Jubes
 

·
Registered
Joined
·
4,583 Posts
Hi Jubes, glad to have you back. Hang around here for a while with
us, and we will help you all that we can. Don't forget that you can ask anything you want, someone will have an answer. I do hope that you are
doing all right.
 

·
Registered
Joined
·
1,289 Posts
Hi Jubes,

Please stick with us, we are all here for each other. I know you are struggling at the moment, it took me a while to post here initially but boy am I glad I did. This site has given me the courage and knowledge to seek the best treatment and without it I'd be lost. As you've probably seen we have some fun too.:)

Please feel free to private message me at any time if you don't feel like posting.

Hugz, :hug:

Pam xxx
 

·
Registered
Joined
·
154 Posts
Hi Jubes

I have not been d/x yet and have stayed off the website since last friday because I've been feeling like an impostor. I have not been well for a while now and it seemed to peak last week. Now that I'm thinking a bit more rationally... I have missed the forum and everyone on it!

You would never say so from my previous posts but I'm the most private person I know. Even my closest friends think I'm "secretive" and don't share enough. (Nobody in my life knows I may have lup) The idea of chatting here with people who don't know/won't judge me and whom I'll prob neever meet(but now would love to) made it easier to let rip.

This is where we get to help each other (we all rant at some point) share in something specail (Little Siera) or hav a really good laugh (Just for fun/off the topic)

Wether you're a lupie or not you deserve support and understanding. Hoping you'll post again soon. X T X
 
1 - 10 of 10 Posts
Top