diagnosed after 4 years

720 Views 5 Replies 5 Participants Last post by cispence98, Jan 27, 2008

andee

Discussion Starter · Jan 27, 2008

Hi,
I have recently been diagnosed after realizing I have had lupus for 4 years. My symptoms are not very bad currently. I have some finger swelling and skin rashes. Unfortunately my anti DNA is high and I have tested positive for the lupus anti coagulent. I had a miscarriage two years ago, but I now have a healthy 8 month old little girl. I am still trying to process all of this. My doctor has assured me it is a positive sign that my symptoms have relatively stayed the same for the past four years, but I am so worried because I know I am at an increased risk for kidney (organ) involvement as well as strokes, more miscarriages,etc. I am trying to stay positive, but I am really scared about having this disease for the rest of my life. I am 31, but I have probably had this since I was 26. I have enjoyed this site. Thanks!!

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sunflowergirl2

· #2 · Jan 27, 2008

:welcome: This is a great site. You will find alot of support and friendship here! It is scary being diagnosed with lupus, but it's not a death sentence (like it used to be). I've had it for 12 yrs. Mostly my joints are affected, have not had any organ invilvement, Thank God! It's hard to accept having a chronic illness, sometimes I think I still don't really believe it. Join us in chat! Cathy

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andee

Discussion Starter · #3 · Jan 27, 2008

Thank you for the response. It helps to know there is a network to talk with.

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Katharine

· #4 · Jan 27, 2008

Hello andee and welcome

I'm sorry to hear what brings you hear but glad you have found this site. It is a wonderful source of support and advice and, of course, loads of wonderful people.

It is quite usual for diagnosis to take quite a while and, as your doc said, it is reassuring that things reamined relatively stable throughout those four years. Now that you have been diagnosed the appropriate treatment will most likely be able to ensure that you don't suffer too many (if any) of the more serious complications of the disease.

It can take a while for the right treatment for you to be found but you should know that a lot of people with lupus lead extremely active lives and don't necessarily have the time to post here. On these boards there are a lot of newly diagnosed people, not yet diagnosed and also the more severely affected. Just so that you don't get "frightened" by reading some of the posts.

A lot of people have lupus without ever having any organ involvement and the treatment you will recieve (are receiving?) further reduces the risk of that.

What treatment have you been started on and how does your lupus affect you on a daily basis?

bye for now,
Katharine

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lazylegs

· #5 · Jan 27, 2008

Hi Andee,

Welcome to the group.

Congratulations on the birth of your daughter. I am sure your little bundle brings you much joy.

When you are first diagnosed it is hard not to be scared. As you become more stable it will be easier to push it to the back of your mind. I find that rest is the key. That will be difficult with a little one, but it is so key in helping to ward off flares.

When you have a free moment I hope you will come visit us in the chat room. It is a great way to get some instant feedback and support.

Take care,
Lazylegs

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cispence98

· #6 · Jan 27, 2008

Hi there Welcome and CONGRATULATIONS its a girl!! I am sorry to hear about your struggles I know that when I finally got diagnosed after being soo sick for soo long I was glad to have an answer and a name of what was wronge with me and now I have accepted it although I don't like it!! The one thing that gets me is that everything gets blamed on the lupus. Ex Oh you have a hang nail its your lupus acting up, I just TRY to grin and bear it!! Best wishes to your baby girl and I pray that she will keep you strong!!
Laura

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