LUPUS UK

Could it be lupus

My 10 year old daughter has ITP (an autoimmune bleeding disorder) and I'm concerned that another autoimmune condition is going on too. She has had pain in her feet, ankles, knees, fingers and wrists for over a year. The haematologist said he wasn't quite sure what it was so sent her to a see the rheumatologist. She checked my daughter and took bloods. The bloods came back fine so she said it's not lupus or arthritis and refered her to a physio who she saw today. At first the physio was thinking an autoimmune cause, but then she saw that the bloods were fine so she said that her joints are very stiff and has given her exercises to do and then return in 3 weeks for more exercises.

She is always extremely fatigued which stops her doing lots of things. She gets lots of headaches, mottled skin and watery eyes and recently feeling dizzy.

All of these thing appear to be symptoms of lupus, but is it possible to have lupus if the bloods came back fine?

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hi grasshopper,i had same problem with you.my daughter had a nose bleeding with a low platelet .you must check SLE profile (ana,anti dsdna,c3,c4 ,etc)blood check to make sure your daughter doesn’t have another autoimmune like my daughter.

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Yes it is posible , I have felt the same ever since I was young and I had never had anyone test me for any autoimmune. 7 years ago I had an very bad case of vasculitis on my breast. Then doctors ruched thinking it was inflammatory Brest cancer had a biopsy and found out it was vasculitis. Was very sick and I went to a Dr specialist in generic. I told him all I was feeling and he send me to do many blood work. At this time everything came back positive for sle. He knows what to look for. My remu took some time to actually give me the diagnosis. Since sometime the test comes out negative and some time positive. What I’m saying don’t give up and keep looking. Have them keep testing her. When you think she has a flair have her tested. That’s how I finally got him to see that I had sle.

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Good advice from Jpabon. Best wishes Kevin

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Hi grasshopper2000,

I agree that Jpabon has given you some great advice. If you are unsatisfied with the current diagnosis/treatment plan then you could ask her GP to refer her for a second opinion. It may be best to get a referral to a paediatric rheumatologist with a specialist interest in Juvenile-SLE. Whereabouts in the country are you based?

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Hi whatever you do dont let this go .i had itp. for years and the doctor wouldnt believe that this was autoimmune (tests neg. at the time). I was well looked after but the lupus and aps. where obviously there. I was eventually diagnosed with lupus and Aps. and now the bloods a very high and i had to retire early. Its best to check this out even if if you have to go to another doctor. Bloods are not always positive straight away.All the best Elfie

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So sorry to hear that. Sometimes these test comes back negative that don’t mean she don’t have it. They need to keep checking her specially during pain time that would be a flair.

I hope is not lupus or any other but if she keeps feeling like that they need to get to the bottom of it.

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