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dont know if i have lupus



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07/01/2008 00:43
firestar_911
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well... basically for the past 7 years...since i was 12 i am 19 now. I've had joint pain, joint swelling, photo sensitivity, hair loss, fatique, ulcers in my nose and mouth... and so on. but most importantly is the joint pains and chest pains. my mom is a registered nurse and suggested lupus to my the dozens of doctors i have seen because when she was pregnant her doctor thought she had lupus. and her symptoms stopped after i was born.

i have done a lot of reading about it. but i just cant get the doctors to listen to me. one even told me i just needed to lose weight and problem will clear up on its own. but i am not just some lazy fat lump... a little over weight, but still athletic i was in cheerleading for 4 years

is there anyone who can give me some advice? or who can relate at all? anyone... how long does it REALLY take to diagnose i've heard it takes a long time...

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07/06/2008 20:29
fibroforever
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I'm sorry you're having such a tough time getting a diagnosis. Sounds like you're going through a lot with your body.

A rheumatologist should be able to give you the diagnosis. They would do special blood work, ask questions, etc. Yes. It does take time. But... they should be able to have some sort of idea what is going on with you.

"When you feel like giving up, remember why you held on for so long in the first place." ~Unknown
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07/07/2008 01:31
firestar_911
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thanks you're the only one that has responded.

I will talk to a rheumatologist! see what they say...



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07/07/2008 19:38
mumeva
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It took a few years for me but I found a wonderful rheumatologist and told her everything I was experiencing and together along with lab tests I was diagnosed with lupus, so what I'm saying is don't give up and keep on going until you find answers, its your body!! Hang in there and this is a great support site were all here for each other.

Eva


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07/31/2008 18:33
Wildflowergirl
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It took a year for me to get diagnosed because nothing showed up in the blood. I had a high sed rate and c protien was high that it and I had a rash on my chest I got the chest pain numb hands hair loss weak etc like you oh most importent joint pain. They said I had Stills Disease. That could also be what you have look it up. It can not show in blood but it has a lot of the same Lupus stuff. I was thought to have Stills diasease till, I got a postive ANA test and some other markers recently pointing to Lupus but it took for ever to show up. I heard it take years and many Dr some times to get diagnosed for Lupus I would have sill been treated for Stills if I didnt go out of town and see a specilist that caught the recent blood labs.

Check out Stillsdisease.org Good luck sweety your Dr better get his act together! My first Dr told me it was all in my head and put me on anxity meds. Your mom need to get you to a Rummy Dr not just a family Dr. Take pictures of your rash and look at the Stills sight. They also need to do xrays of your joints to see if they are ok. I wish you luck email me anytime.

Wildflowergirl

Hang on dear hang on!

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07/31/2008 23:53
firestar_911
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wow, thank you all so much you've given me a lot of good advice. i really do appreciate it.
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08/13/2008 12:52
AndrogynousDream
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I know someone who had lupus for many years before it got diagnosed, and another who suffere kidney damage because no one would listen.

I have also had people say some very hurtful things to me in discounting my illness, so you're not alone. If you think something's wrong, keep talking until someone listens.



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