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Thread: Grasping at straws but...need opinions

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    Default Grasping at straws but...need opinions

    My daughters blood work was faxed to me and here are the following highlighted results. They all came back normal. Except for parvovirus b19.
    Question is can all these test come back normal and still have lupus?
    Thanks for any replies.
    Comp. Metabolic panel- Normal
    Urinalysis-Normal
    Sjogren's-Normal 4, range-0-99
    Smith Antibodies Normal 4, 0-99
    Anti-DNA Normal 2, 0-99
    Complement total Normal 52, 22-60
    C-reactive protein Normal 1.9 0.0 4.9
    sed rate 6, 0-20
    Parvovirus B19 5.4 range 0.0 0.8

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    hi silentscream,

    i am sure others with much more knowledge than me will be along soon. My opinion to your question is yes.....that just happened to me today. The only bloodwork that showed any problem was the ANA.....i really can't explain this crazy stuff...wish i could.
    Phyllis

    share a smile today

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    Default hi

    I think the answer is yes, but im not very up on the knowledge as i am learning it as you are. Please know i am thinking of you and your daughter. Someone will be here soon to help you.

    love
    Angel.xx

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    Silent Scream...

    Have you researched Fifth Disease with the positive the Parvovirus 19....?

    In regards to your question, yes you can have negative tests and still have Lupus..

    Tests, labwork are just a small piece of the puzzle. The help to rule out other diseases. Has she met the other ACR criteria for diagnose? Four of eleven is required...

    Refer here for the criteria...http://www.lupus.org/webmodules/weba...id=75&zoneid=9

    And this Sticky....http://forum.wehavelupus.com/showthread.php?t=4665

    Hope this helps...
    Wishing your daughter wellness..
    Love,
    Oluwa
    I have Lupus. So *^#@! what.

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    So worried tonight, she just called and told me her throat is soar and her tongue looks strange but also her chest feels heavy and she feels a little short of breath. I am so far away and can give little comfort. She is all alone at school.

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    Thanks well she has four of the eleven.

    I was holding out hope for the parvovirus.


    Quote Originally Posted by Oluwa View Post
    Silent Scream...

    Have you researched Fifth Disease with the positive the Parvovirus 19....?

    In regards to your question, yes you can have negative tests and still have Lupus..

    Tests, labwork are just a small piece of the puzzle. The help to rule out other diseases. Has she met the other ACR criteria for diagnose? Four of eleven is required...

    Refer here for the criteria...http://www.lupus.org/webmodules/weba...id=75&zoneid=9

    And this Sticky....http://forum.wehavelupus.com/showthread.php?t=4665

    Hope this helps...
    Wishing your daughter wellness..
    Love,
    Oluwa

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    Isn't parvovirus b19 one of those infections that can mimic Lupus? I mean I think I have read that it is one of those self limiting things that once gone - so goes the Lupus symptoms.

    I don't want to give you false hope - but I think there is some hope because my docs assumed I had a virus/infection and this is one of the ones I prayed for because it gave me hope.

    I do understand there is a close relationship between parvovirus and autoimmune - whether it turns out to be a trigger or an imposter - at least you can hope for the fact that it may not be a lifelong thing.
    Last edited by chas; 03-05-2009 at 08:26 PM.

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    Default Silentscream

    Quote Originally Posted by Silentscream View Post
    So worried tonight, she just called and told me her throat is soar and her tongue looks strange but also her chest feels heavy and she feels a little short of breath. I am so far away and can give little comfort. She is all alone at school.
    You're in such a difficult place to be....far from your daughter and knowing she's all alone when she has problems. I'm sorry. That can make you feel so helpless.

    The symptoms she's having that you describe can all be caused by the Lupus. They can be part of a flare. The very first symptoms that appeared for me mimicked the flu....sore throat, low grade fever, aching feeling all over, headaches and extreme fatigue.

    Sometimes, through the course of your Lupus, you can have the heavy chest feeling and shortness of breath that come and go with a flareup...quite a few of us have experienced those. What you need to watch for when she has those is a fever that's higher than, say, 99 degrees. If you spike a higher fever and the heaviness in your chest gets worse, as well as the shortness of breath, you need to call your doctor right away. With Lupus, you can get pleurisy (inflammation of the lining around your lungs) and pericarditis (inflammation of the lining around your heart).

    I'm not telling you this to worry you, just to let you know that if the symptoms are pretty mild and with no fever or low grade, then it may just be part of a flare. But if your fever goes higher and you are having great difficulty getting a deep breath, and it feels as if someone's sitting on your chest, then you need to get checked out right away. In one of my first major flareups, I got both pleurisy and pericarditis together and it became so hard to breath, that my mom took me to emergency. I was admitted and treated with IV steroids to clear it up.

    Also, there are a lot of flus and viruses running rampant right now, and if she's picked up one them, she may be experiencing symptoms from that and those may trigger other symptoms with her Lupus. Perhaps, let her know that if she starts feeling any worse with the breathing, chest issues, and/or if she spikes a fever, she should call her doctor or go to emergency right away. I waited a bit too long and by the time I got to emergency, I was a really sick girl. Thankfully, they have medication to treat those conditions.

    I hope this will be of some help for you in trying to assist your daughter from far away. I wish I had more to offer you...please know that my heart aches for you as you try to be there for your daughter and help her through this difficult time.

    I'll be praying for you both...I've been doing that since you first appeared on this forum.

    Fondly,

    Lori

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    My former boss had parvo and he said it was the most excrutiating thing he'd ever experienced (and that was AFTER his vasectomy ). He said he felt like he'd been run over by a truck and then backed over just for good measure. If I recall, he had incredible fatigue, aches, a fever and bilateral shoulder pain that made it difficult to raise his arms. He was on heavy duty antibiotics and pain meds. This was about 10 years ago, so I don't recall much. He was out of the office for two weeks (long time for a work-a-holic).

    I hope your daughter starts feeling better soon and you get some answers. I know it's not easy when your "baby" is hurting and away at college. Kinda hard to reach out and give them the hug and nurturing the need at a time like this

    Hang in there, Dad.

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    hi silentscream,

    i sent you a pm about this.....

    phyllis
    Phyllis

    share a smile today

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