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Thread: anit-DNA - what does it indicate?

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    Default anit-DNA - what does it indicate?

    My 18 year old daughter has a butterfly rash and after a sample was taken by a dermatologist the result was positive for lupus discoid. Further tests were all negative except for the antiDNA test, 5.1 and a urine test which had e coli in it.
    The dermatologist suggested that my daughter does not have SLE, wants to see her in 3 months, but doesn't think she needs to see another doctor.
    Over the last year she has had many infections (kidney, uti) and was hospitalised in the middle of the year. There was protein in her urine for many months even after continued treatment with antibiotics. She is often tired but doesn't complain of aching joints. After reading about lupus I wonder if any of her past illnesses have been related to lupus. Her eyes at the moment are red, sore and dry, even after using drops. They have been like this for some time. She had fainting spells, but tests showed no abnormalities.
    Can you tell me what the high anti-DNA actually indicates? Am I worrying unnecessarily?

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    I don't think a dermatologist is qualified to make the decision if she should see another doctor or not.
    She should see a rheumatologist in my opinion.
    Her dry eyes indicate that she could have sjoegrens, another reason to see a rheumy.
    Please suggest to her to make an appointment now, because sometimes it takes months, before you can get a first appointment with a rheumy, just because they are so busy.
    That is what I would do, better safe than sorry.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    i agree, with debbie.
    the list of symptoms your daughter has, see a rheumatologist.
    they specialise in this type of medicine.
    a dermatoligist is good with skin.

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    Quote Originally Posted by KToz View Post
    My 18 year old daughter has a butterfly rash and after a sample was taken by a dermatologist the result was positive for lupus discoid. Further tests were all negative except for the antiDNA test, 5.1 and a urine test which had e coli in it.
    The dermatologist suggested that my daughter does not have SLE, wants to see her in 3 months, but doesn't think she needs to see another doctor.
    Over the last year she has had many infections (kidney, uti) and was hospitalised in the middle of the year. There was protein in her urine for many months even after continued treatment with antibiotics. She is often tired but doesn't complain of aching joints. After reading about lupus I wonder if any of her past illnesses have been related to lupus. Her eyes at the moment are red, sore and dry, even after using drops. They have been like this for some time. She had fainting spells, but tests showed no abnormalities.
    Can you tell me what the high anti-DNA actually indicates? Am I worrying unnecessarily?
    No you aren't worrying unnecessarily. I believe in the power of mother's instinct and yours are telling you to go find another dr. Talk to your PCP/Pediatrician. Depending on your insurance you may need to seem them for a referral to the rheumy anyway. They should also know what the dermatologist's diagnosis is. One thing many of us have learned from these so called "specialists" that you are quickly learning - if it doesn't pertain to the part of the body/area of specialty they practice, then it doesn't exist on their radar of care or concern. They will quickly blow off symptoms of some other system as a whole and completely other issue which is so often wrong when our organs, although seperate systems on their own, function together as a whole.

    Some things to help you and your daughter navigate this diagnosis:
    - keep a copy of all her medical records, especially lab tests done and bring them with you to the doctor appointments. If they want a copy insist on having your copy returned to you.
    - document, document, document. If your daughter has symptoms that are visible take pics, keep notes, bring this all with you. The more the doctors can see the better they will treat her. So often we have mini-flares of symptoms that only last hours or days and are gone by the time our doctors can fit us in.
    - don't be afraid to insist that the doctors listen to you. If the doctors say it's just a childhood thing and you know in your gut this just isn't normal for your child- fight it. You know your child and her body better than the doctors know her. You may have to bang on several doors or you may have to take on the protective mama don't f* with my baby persona. You may also be lucky on the first shot and have the docs listen to you. That'd be great. If not, don't be surprised. Many of us have alter egos when it comes to dealing with doctors who just don't seem to want to listen until we open our cans of whoop---.
    - perhaps the most important thing - because your daughter is a minor still she really needs you to be her advocate. There are several members here on or around your daughter's age and the ones who have had the most progressive treatment are the one's who have a good support team like yourself. Keep fighting until you feel you are being given an honest answer and some sort of help for your daughter. She is very lucky to have you. Many people here fight this battle alone and to do so at 18 is extremely hard and overwhelming.
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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    Bravo to everything Sandy said! I am going through the same thing as you but my daughter has already gone to the rhuemy and now she is in a "we want you watch you so come back every 6 months" place. I know how scary it is when it is your child and I agree with both of the ladies that spoke above me, go to her PCP and get her to a rhuemy!

    It can't be repeated enough but get copies of EVERYTHING! I even get copies of my MRIs (the pictures not just the results) because I never want anyone to say "oh, you will have to come back because I ___________ (fill in the blank). Go with your gut and get her to a rhuemy. Stay on top of things even if you think it means you are being annoying. It is not wrong to want someone to take care of your child!

    Keep us posted!
    Mari

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    Hi Everyone,

    Thank you for your replies, advice and support. My daughter, a bit like her mother, is never one to complain and hates a fuss being made, but I will definitely make an appointment with her GP (who missed all the signs) and ask for a referral. You are correct when you say that we should trust a mother's instinct. I have known in my gut that something hasn't been right for some time. Sometimes we just need a test result, or someone to afirm your instincts.

    I have asked the dermatologist to forward the test results to her GP and have asked for a copy of her latest urine test to be sent to me. Unfortunately she has seen many different doctors over the last couple of years, it seems that she often got sick when we were on holiday (exposure to more sunlilght, perhaps) but am going to contact them and ask for her records to be forwarded to either me or her present doctor. Thanks for the advice, it seems from the little reading I have done and what you are all saying that this is a condition that can be quite different from individual to individual.

    I'm hoping my daughter will join the forum, I know that it will help for her to talk to others, but at the moment I think she needs some time to process everything.


    Thank you again for taking the time to reply to my post.

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    Let your daughter know that many people with Lupus go on to have very productive normal lives! The sooner she gets on meds the sooner ya'll can start getting things under control.

    Please know that we are all here for you, and her, if you need us!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

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    Hello KToz,
    Thankyou for letting us know your daughter's story and a large welcome to the WHL.
    I do agree with everyone she needs to see a Rheumo to get bloods took and to see what your girls going through but with my own experience, my Dermatologist diagnosed me with raynauds, took bloods and then i was refered to my rheumo Doctor, all i can say is it is everyone to there own when seeing doctor's and my dermo treats me and feeds me better info than i can get off my rheumo.

    I do suggest being persistent unless the doctor's your daughter see's are ok and once under a rheumo specialist they will test your daughter's eyes as i have it, it's to see how dry they are.
    She's one strong person not to moan and i admire you daughter for that one and being so young. It will be nice getting to know you and please keep we informed if your able to if she's sent to a rheumo specialist.

    ((Hugs Terri)) xxx

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