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  • Help! ANA +, other tests -, but met 4/11 criteria for dx

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    Old 06-11-2004, 12:35 AM   #1
    UT_mom
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    Question Help! ANA +, other tests -, but met 4/11 criteria for dx

    Hello all! I have a question. My ANA test was positive 1:160 (unsure of pattern) and my sed rate was elevated. Also I have met four diagnostic criteria for systematic lupus: mouth sores, fatigue, arthralgia, positive ANA. Other symptoms I have are bowel problems (having colonoscopy on 25th to rule out IBD or some kind, Fecal Occult was positive), abdominal pain, short term memory problems, lose track of thoughts easily, can you say brain fog, that's me. Also experience chronic yeast infections resistent to treatment, fatigue, fatigue, more fatigue, hair loss, mild sore throat 4 days per week at least, headaches several times per month, no sun rashes but I do develop icky symptoms like aches and headache after small amount of sun exposure sometimes, erythema nodosum, and I know there's others but please pardon me as my brain is simply not allowing for normal thought at the moment. Well my doc ran more tests such as anti DNA, antiphopholipids, renal function, CBC etc.. etc... and thankfully they all came back normal but now I'm confused. Does this mean I do have lupus and just have no organ involvement or does this mean I don't have lupus and need to keep looking for just what it is that I do have?? Can anyone help me out here, I see the doc on the 25th and will ask him but I'm feeling a little confused right now. Thanks for your help! Oh my brain switched back on again and I thought I would mention chronic dry eyes and all these things exacerbate during or just before menstration and when I get tired.

    Last edited by UT_mom; 06-11-2004 at 12:40 AM. Reason: my brain starting working again momentarily

     
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    Old 06-11-2004, 02:33 AM   #2
    angelbear1768
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    Re: Help! ANA +, other tests -, but met 4/11 criteria for dx

    Hi there, first let me say I am sorry you are going through this. Secondly it all sounds alot like the stuff I have been going through for about 3yrs now. First they say yep lupus then no fibro then yes lupus then back to fibro. I was so confused finally my internal med doc sat me down and we had a long talk. He said they are 100% sure something is medically wrong with me but unfortunately there are no definative tests for most autoimmune diseases. He says he feels that I most likely have lupus but I am currently lumped under the fibro heading because that is where they put you when they know for sure something is medically wrong with you but cant conclusively nail it down. He said the best that they can do is treat the symptoms until they figure out for sure what the problem is. I dont know if that will help but that is what he is telling me.

     
    Old 06-11-2004, 05:09 AM   #3
    VeeJ
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    Re: Help! ANA +, other tests -, but met 4/11 criteria for dx

    caden/logan_mom, YES. It's absolutely possible to have lupus without major organ involvement. Many of us here fit that category, I think. You could almost work your question backwards, by asking how many of us with the Dx have NEVER taken steroids or immune supressants: we'd likely be the ones without known organ involvement.

    Of everything I've read on the subject, I keep remembering something a world-renowned British specialist wrote about how very easy it is for even an average doctor to Dx lupus where big antibodies are found, i.e., anti-ds-DNA and anti-Sm. Anyone could do THAT!, he says. With his eyes closed! With his hands tied behind his back!

    Well, I added a bit of drama, for impact... This famous specialist does not mention closed eyes &/or hands being tied. But his point is very clear.

    By the way, AngelicBrat's "sticky post" of "Alternative Criteria" was developed by this same specialist, who sounds to me like nothing short of a towering genius in this field. He actually developed his Alternative Criteria list to address the harder-to-diagnose cases, the ones that do not scream "lupus" from the get-go.

    It's trickier when a patient has four (or more) of the "4 of 11", where the ones she/he has are not necessarily lupus-specific, meaning could happen in other diseases, too. e.g., rashes, fatigue, hair loss, mouth ulcers, photosensitivity, positive ANA. When you add them together, they *should* convey even more as a lump sum. So some doctors do make the call readily, but many others (just read many of the posts here!) seem to be waiting for something with virtual 100% specificity, like anti-ds-DNA---which, by the way, many lupus patients will never have.

    It was only my rashes that got me a Dx---after eight years of trying. My local specialists had (1) never heard of the SCLE subset, and/or (2) I *suspect* were waiting for anti-ds-DNA or anti-Sm to crop up.

    Angelbear, my local GP and I argued for about 2 years. He knew there was something wrong & said so bluntly when I pressed hard. He referred me to local specialists (dermies, rheumies, urologists, gastroenterologists), who basically blew it. Is your doctor the sort who'd refer you OUTSIDE his local affiliation, if you keep striking out? He's levelling with you, yes, but I'm sure you'd like true progress as well---meaning a Dx & treatment.

    Best wishes to one & all, from Vee (edited to remove the specialist's name)

    Last edited by VeeJ; 06-11-2004 at 05:13 AM.

     
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