[Miggle]

Hello there, My name is jessie and im 17 years old.

I Have had a few blood tests taken lately and the last one i had said they have found lupus.

Now i'm completly new to hearing this..i'm kind of worried about it.

I have to go back to the hospital in september to get another blood test and wait around to see what type i have.

I was basicly wondering what lupus is..as when i search it on the net it makes it sound really bad and makes me worry more haha. And what kind of treatments are there?

Thanks

 

[Katharine]

Hello,
First of all, try not to worry.
Lupus can be very bad, but also there are people who are hardly affected at all and with correct medication a lot can be done. Knowing whether you will be badly affected or not is difficult - No-one knows and only time will tell.
The best thing to do is to get your doc to explain more to you. Having the info often puts your mind at rest.
Please don't worry too much when reading the messages on this site. The site is here for support and advice and those who need it are those who are more severely affected or who are newly diagnosed and need info.
a lot of people with lupus are out there working away and are far too busy to be coming on here :lol:
You can get good info from the lupus site (linked to this message board) and also from the St Thomas's hospital site. You could start by taking a look there and then ask your doc to help you understand anything that's not clear.
best of luck,
Katharine

 

[Clare.T]

Welcome miggle !

It is not surprising that you feel worried , probably very anxious. There is no one test for lupus - symptoms are as important as blood work. The usual first test is called the ANA but it is not specific for lupus. There are many other tests that will be done. I suppose you are seeing a rheumatologist in September ?
Ask your GP for a urine test meanwhile.

It's a good idea to start learning about diagnosis and tests as you go along because the more you know the easier it is to deal with it and get the most out of dcotor's appointments.

There are a number of medicines for treating lupus depending on how what its effects are and every body is affected a little differently.

I suggest you don't start reading too much because the worst cases are usually described and many people live perfectly normal lives with their lupus well controlled. There is also a lot of out of date information and plain false information out there.

Feel free to ask any questions here - we will help you all we can.

Bye for now !
Clare

 

[Miggle]

Hello Again Thanks for the info you guys. I asked my mother what tests im going for and she said the september appointment is for the rheumatologist.

To be honest my doctor doesn't seem to tell me much about what the tests are for.

All i know is that she did a number of tests and two of them came back saying i have Hughes syndrome and lupus...

I was really confused at the appointment as she never told me much about it..or what the next test is for. whenever i asked all she kept saying was "i don't know you'll have to ask when you go to your next appointment"

Thats why im so worried, she never told me anything.

But in the letter i have they the next appointment is for the rheumatologist.

 

[Katharine]

Well, I'm glad to hear you'll be seeing the rheumatologist.
That should make things a lot clearer.
Make sure you make a list of your questions, it's so easy to "forget" at the time,
best of luck,
Katharine

 

[lin]

Miggle al the best for you forth comming appointment good luck,,,,,,,, and yes write down things you want to ask, doesnt matter how silly it may seem, will make sence to them

take care Lin xx

 

[Miggle]

Hello there
I moved house with my mum and she never had the internet so i couldn't come online! but now we do and i have a new pc, yay!

Anyway.

So the doctor told me i have lupus anticoagulant.
He never told me what the difference is. To be fair i don't really like him but aparantly he's the best one we have in the wirral?

The thing that upsets me is that i have all the symptoms of SLE, he even said it himself but it never came up in the test i have sle.

I've read up that aparantly theres not a test to actually prove you have it, or is there?
i'm just so confused and my doctor doesn't answer my questions properly
the only thing he really told me is that i will have trouble with pregnancy?

I'm tempted to try go to st thomas?

 

[Katharine]

Hi Miggle,

The lupus anticoagulant test is a test for APS not lupus (confusingly). It needs to be done twice (usually 6 weeks apart) and diagnosis is usually confirmed by a clotting event.

APS is generally well controlled with medication which is often as simple as one baby aspirin a day.

Saying you will have trouble in pregnancy is a bit of a blanket statement. You will be at a higher risk and will need greater follow up but plenty of people with APS do have healthy pregnancies with the right care.

APS can also account for many symptoms that are shared with lupus.

If you have an opportunity to go to St Thom's it might be a good idea even if only to reassure and give you a second opinion. The consultants there are usually very good at answering questions.

hugs :hug:

Katharine

 

[onetay]

hi Jessie,
Please try not to worry, Katharine is right about a lot of people have it and in varing degrees. There are a lot of meds and it will take time to find what works for you. I have had it for 15 years and was working full time until september when i needed to drop a few hours just for awhile. Try to stay positive and if you need to talk just go to the members list and message me. It is always scary to find out you have something wrong but know it can be treated. You will need to listen to your body better, try to think of it as a warning sign. if you are tired slow down or lay down if you are fine then keep doing what you are. I did the same thing you did and cried more by the search than at the doctors office. Let me know how things go with your next appointment god be with you.
Tammy