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Thread: Diagnosed with Lupus but have negative test results

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    Default Diagnosed with Lupus but have negative test results

    Hello. I am a 39 yr old female computer programmer living in Dallas, TX.

    So. On Monday I saw another rheumatologist who, after looking at my hair and listening to my symptoms said that I have many "classic symptoms" of lupus and that he "...feels confident to go ahead and mark that I have lupus." He also put me on hydroxychloroquine.

    My history in brief: constantly low white blood cell counts. Low neutrophils. This has been going on for atleast 6 years. I don't have much medical history on record prior to that. Saw a hematologist & rheumatologist 2 years ago. Both said that while I am immunocompromised, all test came back negative so I'm "fine" and then sent me home. ANA counts have always been high.

    I have since fired my primary care physcian for various reasons and am now see a fabulous doctor - who also happens to be my boyfriend's doctor and has helped him diagnose his situation.

    She insisted I see another rheumatologist, who I saw on Monday. He is confident I have lupus, although a very very very mild form of it since the lab tests done on Monday came back negative for lupus, rheumatoid arthritis, and sjordgen's syndrom. (Even the tests 2 years ago tested me for leukemia, came back negative.) So he insists I take hydroxychloroquine. I am.

    It's weird to be diagnosed with a disease but have test results come back negative. I have all but given up.

    My symptoms I've complained about:
    * Fatigue - oh boy is this bad, i never feel rested
    * Major hair loss - accelerated in the last 2 years
    * Muscle pain
    * sores in my mouth
    * I LOATHE the sun. Now, i don't get skin rashes and I told him so, but the sun really really really hurts my eyes. And so does flourescent lighting.
    * Sometimes my knees hurt, and my hips have started to hurt this really weird pain.
    * He saw some swelling in a couple of my knuckles
    * Difficulty walking - the pain is in my feet. but it's a dull pain, pain to put pressure on them when I first stand
    * Stiffness and soreness in the morning
    * EXTREMELY low white blood cell count and nearly non-existent neutrophils
    * Very high ANA count

    I dunno. I'm going to go see a hematologist again. I may go ahead and get another bone marrow biopsy (it'd be the FOURTH one.) and see what results of that. Apparently, I'm making granulocytes, and my EOS and BASOS counts are fine, but Neutrophils.. what are those? asks my body.

    Ok. so. That's me in a nutshell as it relates to lupus. I'll be looking for more folks who have been diagnosed but have negative blood tests results for lupus. That's just so weird to me.

    Hi. Nice to meet you.
    -- Jayne
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    Spiffy URL: http://www.jayneclaire.com
    Nifty paper crafts: http://www.ittybittyscraps.com

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    It is not that weird. Having ANA negative Lupus happens often as well as having Lupus with negative lab results (I believe that there is a discussion elsewhere in these forums about that exact circumstance). As you and your doctor have recognized, you do have the classic symptoms of Lupus.
    I, myself, am considered to have "Mild Lupus" which, my doctors have explained, means that I have many of the symptoms without the lab results and without having to take a lot of medication. So, I suppose that you and I are in the same boat :lol:
    Are you taking Plaquenil as your hydroxychloriquine? If so, did your doctor explain that it could take weeks to months before you really see the effects of Plaquenil, but that it is one of the standard treatments because of its effectiveness?
    You can always come to this site for information and answers, there will always be someone here to help you. Again..welcome!

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

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    Saysusie,

    Hi there! Thank you for the warm welcome.

    Yes, I am on Plaquenil. 200 mg tablets, 2 times a day.

    I did some research on Plaquenil and found that it can take at least 8 weeks, and sometimes longer, to be effective. My Rx is for 5 months for right now. I suspect I'll get it renewed at the end of 5 months.

    Thank you for telling me it could take a while and confirming what I have found online. I know I'll need to continue using it for a while.

    While it may seem like I am in denial, I'm not, really. I mean, this is finally an answer for why I feel the way I do. Tonight, I was playing Guitar Hero III (hehe...). I was playing with my boyfriend and after a while I kept missing the notes, even worse. My fingers just did NOT want to move. I asked him if his hands were hurting. He said no. (And he has multiple sclerosis and Celiac disease.)

    We stopped after a while and I could barely move my left hand after all of that activity. It's freaky because I am left handed. You know... without having the lab results come back positive, it's been difficult for me to accept that it's Lupus. That what I feel and have must be something else. My doctor has told me that I have very very mild lupus - which is one reason why my tests are negative.

    After reading a few messages on this forum where people have Lupus without positive test results, and how my hand was feeling tonight (it's actually still hurting a bit but not as bad) I'm becoming more convinced that this (what I've been feeling) is what it is. Finally ... and answer. That's all I really wanted.

    I just hope that my hands can give me a few more decades of use ... consdering they're my bread and butter as a computer programmer. :P

    I look forward to getting to know everyone on this forum.
    -- Jayne
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    Spiffy URL: http://www.jayneclaire.com
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    Hey there,

    I am from colleyville tx.( Which is in Tarrant county) what Dr do you go to? You said that you found a wonderful one. One of the Drs that I have gone to said that the problem with me is that it was all in my head. Actually it was two who said that. One called it Crazy womans disease) I was afraid that they were right until I found my present Rheumatologist out at Presby.
    Well, hope that you are having a great day
    :sleeping: - This is what I always feel like doing.

    Blessings,
    Karen

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    ops: Sorry about the double post. Problems with my 'puter. ops:

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    No Problem Sickntired...double post has been removed!

    jynclr07:
    One of the common symptoms that we suffer from is arthritic pain in our joints. It is this arthritic pain that has caused many of us to be misdiagnosed with rheumatoid arthritis!
    Plaquenil does help with this arthritic pain, but as we stated, it can take weeks to months before you feel the full effect of Plaquenil. For this reason, doctors often prescribe prednisone with the plaquenil so that the patient can feel results sooner. Prednisone is a corticosteroid and it is prescribed for many reasons, inclucing to reduce swelling, redness, inflammation and pain.
    Has your doctor mentioned Prednisone or any corticosteroid to you? If not, maybe you can talk to him about something to help with the pain and inflammation in your hands!
    Remember, you can always come to us for support, information and answers. You are not alone!

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

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