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Posted 9/20/2015 12:21 AM (GMT 0)
Hi I'm a thirteen year old girl who has really suffered the past 6 months. Diarrhea, nausea, mouth olcers, dizziness, fatigue, memory loss, confusion, falling over, headaches, joint aches, weight loss, hair loss and mental fog. They've ruled out parasites, cysts, inflammatory bowel disease and celiac. My GP took a blood test for thyroid, blood, inflammation, liver and kidney and all that,was found was a low white blood cell count so she referred me to a paediatrician who is making me wait 2 weeks and I'm getting sicker. My mums mum has LN and her cousin CLE. My step sister isn't related but has SLE. Is it likely to have lupus and are these symptoms?
Posted 9/20/2015 1:09 AM (GMT 0)
HI there! I dont know much, but I know they typically test something called your ANA first in order to consider a Lupus diagnosis. If your ANA is positive, then you will do Lupus-specific blood work from there.
I believe if your ANA is negative, they consider you not to have Lupus. So, if your ANA was tested and it was negative....don't worry about Lupus.

about a month ago, I was scared out of my mind (I'm 31). I've learned to relax a little while waiting for answers. I understand as a 13-year-old, you must be scared....but trust in your doctor and your parents that they will lead you in the right direction.
You shouldn't be stressing like this as a kid.
I hope you get to feeling better and find some answers.
Posted 9/20/2015 1:23 AM (GMT 0)
Can you let us know what LN and CLE stand for? I'm not familiar with those abbreviations.

You have a number of symptoms that are NOT generally seen in auto-immune diseases like SLE (Lupus), so I doubt that is what it is.

However, LMD023 is not totally correct - a positive ANA means you *might* have an auto-immune disease, a negative means you probably don't, but you still could. Either way, ANA is NOT a definite YES or NO.

Seeing a Dr more experienced in diseases that hit your age group is probably a good idea - I'm sorry they can't see you sooner and that you have to wait another 2 weeks.

How is your sleep? Are you eating fairly well? (I know that can be hard with nausea and diarrhea, but try to eat protein, fruits & vegs rather than junk.) Getting a little bit of exercise?

Let us know how it's going, and try not to worry. Maybe you could ask if the Dr has a cancellation list -- then if someone cancels you could be seen sooner. Hope you feel better soon.
Posted 9/20/2015 1:36 AM (GMT 0)
Thanks! NL (lupus nephritis), DLE (discoid lupus erythematosus) and SLE (systemic lupus erthematosus).

It runs in my family so I thought it could be it.

I have not had ANA tested because I haven't seen my paediatrician yet. So I don't really know.

I am nearly bed bound; can't exercise with my swollen muscles and joints, eat well and sleep about 14 hours a day because this makes me so tired.
Posted 9/20/2015 2:39 AM (GMT 0)
Fevers have hit for the first time
Posted 9/20/2015 3:45 AM (GMT 0)
So sorry you are doing poorly. Sorry I didn't know the abbreviations - on here people seem to say nephritis or discoid if they don't mean SLE.

By exercise I just mean something gentle, like walking to the mailbox and back. You want to keep moving some to keep things working. I know what it's like to sleep 14+ hours and still feel exhausted.

Have they tried any medications? Six months seems like a long time for how little it seems like they've done.

Hang in there!
Posted 9/20/2015 3:53 AM (GMT 0)
Thanks! I can barely leave the house so it's kinda hard. I'm not on medicine. I just got left there until I see another doctor.
Posted 9/20/2015 6:11 AM (GMT 0)
Since you can't leave the house I assume you're being careful of UV rays. UV rays make me feel terrible. Stay away from windows (sunshine comes in) and check to make sure there's no fluorescent lighting in your house (CF bulbs too).

Hang in there, honey. You'll be in my thoughts.
Posted 9/20/2015 6:15 AM (GMT 0)
Thanks!

It's making me nauseous so I stay on the shady side of the house and away from windows. I've had the lights off mostly as well.
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