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Discussion Starter · #1 ·
Hi everyone. I'm so confused my daughter last year in Arpil tested positive to sle and ana so she wasa referred to see a rheumotoligist in September she had bloods done up there and was told it was normal so she didn't have arthritis or lupus.In February of this year she was addmitted to hospital with more sevre pains going up her legs and she was tested again and it came back postive for sle and ana.Is this common in suffers.She also has other symptoms.
 

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elisabethm
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Hi Natale yes it is posible to get one doctor telling you that you have sle then another one to tell you that they are not sure i was at my rhymy in february and he said he was not sure if i was lupus it is a hard thing to get two doctors that will give you a posotive yes or no did they start her on any medication if so what did they give her what age is she hope you get some answers here on the site it is a great site to be on as every1 has a diffrent story to tell and you are made to feel so welcome:) from elisabeth
 

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Hello and welcome,

I don't know where you are in the world but it sounds very much like a second opinion would be useful. Preferably by a rheumy who specialises in auto-immune diseases.

Getting hold of a copy of those blood tests would also be very helpful.
Do you know exactly which ones they ran when you say ANA and sle (?)? Was the second one the anti ds dna test?

If you need to there is a "find a doctor" section here that can be useful.

Diagnosis can be a little complex and incredibly frustrating, even more so where a child is concerned.

Bye for now,
Katharine
 

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Discussion Starter · #4 ·
Thank you for your reponse. She is on co-codamol30/500mg 2 four times a day and naproxen 500mg twice a day but these are not doing much for her.She was on tramadol 50mg and they did nothing no pain relief at all.She is 13yrs now she has had this problem for 2yrs now and we are back and forth seeing paediatrics every 3mths. The last one we saw needed to see her past blood tests before he can say anything..She cries at night with the pain and I feel useless cause I can't help her with it.
 

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Definitely get her into a rheumatologist - they will best be able to diagnose her and will get her on medications that will actually help control the underlying disease process. In the meantime, learn all that you can about lupus. Get copies of all her past bloodwork from the time she's been sick with this. Take it all with you to the rheumatologist appointment. Be sure to ask for a urinalysis if one has not been done yet.

A positive ANA test in high enough titre, a few month apart or more, in conjunction with symptoms is usually enough to warrant an autoimmune diagnosis of some sort and appropriate medication. The medication she is on now is only pain medication, and not treating any underlying disease process. You can read all about diagnosing lupus, and the symptoms of lupus on the main website but here is one link for you to follow:

http://www.uklupus.co.uk/dxlupus.html

I hope you and your daughter get some answers soon, and truly helpful medication. Welcome to the site, please let us know if there is any other way we can help you.
 

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Discussion Starter · #6 ·
She has the following symptoms: joint pain which started in her ankle then after every good spell the pain seems to move up her leg into her knee and know her hip, she sometimes struggles to breathe she says it hurts when she breathes in, she gets more pain in her lower back, mouth ulcers, a bit of a tempreture at night, when she is out in the sun she has a rash, her feet and hands are always cold and in school she had an eye test which came back she needed glasses. Which i belive these are sympotoms of lupus. The pain seems to ease in the summer and gets a lot worse in the winter.
 

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Leg pains

Hi Natalie,

Firstly welcome to the site and hopefully it will help you and in turn your daughter to feel a bit better with all thats going on... it must be awful for you!

I've just been diagnosed in January and one of my key symptoms is pain in the muscles and joints. My legs are worst of all and almost permanent. I have to use special walking sticks to support my weight in order to continue to work until hopefully I can get my symptoms to go in reverse.

Just a suggestion and obviously with your daughter being younger, I'm not sure whether it would be suitable but I am on a low dose of amitryptilene which is a muscle relaxant. I worked up 10mg a time til I reached 50mg and now I'm on other medication from the consultant I have dropped back to 20/30mg a day. I have found this to be a huge help particularly at night and in general I can now have a much less painful and more restful sleep, only waking to turn for hip joint stiffness. If your doc thinks its unsuitable, the other thing my GP prescribed me is a higher than RDA of folic acid which has also helped a little. Not technically minded how it works but it seems to...

Like I said, I'm not a GP but I have found these things have helped me so they may be worth suggesting to yours. As a mother myself I know the agony you feel when your child is in pain and you feel you can't help so if at worst, its worth suggesting and if agreeable with your GP taking things into account, then anything is worth a try. I got mildly sleepy on the ami to start with (1-2 days each time the dose went up on a weekly basis) but if you take them in the evening (7pm in my case) I got very little drowsiness during the day. I have no side-effects with the folic acid.

I hope this helps a little and please keep posting so people here can hopefully keep helping,

Hugs and best wishes to you and your daughter,
Lynette
 

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Discussion Starter · #8 ·
Thank you all for your advice and i will take her to see our GP and see what he says. I will keep you all posted. Once again thank you
 

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Discussion Starter · #10 ·
We went to the GP today and he has given her amitrypiline 10mg for 2 weeks and if it doesn't help then she ahs to raise it to 20mg.Thank you for your suggestion. Hopefully it will work while we wait to see another paediactrian.
 
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