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    Old 06-22-2006, 07:19 PM   #1
    gina9871
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    Question How many have tested negative...

    How many of you have initially tested negative for lupus (low ANA titre, neg Anti-Ro, neg anti-smith, complements C3 & C4 ok, etc.) but continued to have lupus-like symptoms and were later diagnosed with lupus when serum levels were higher?
    I've read where many of you have shared that it took years to be diagnosed and/or to test positive for lupus, so I'm wondering if this was even after the complete battery of serology labs?

    I've had a low, weakly-positive ANA titre but every other lab (listed above) was negative but I've had 8 of the 11 physical symptoms and I'm STILL sick... for 6 months now.
    I just had a clear bone scan (yea!yea!yea!) , clear pulmonary function tests for asthma and blood work looks okay.

    Also, for those of you that have overlapping fibromyalgia with lupus, which was diagnosed first? From what I've read, with fibromyalgia, one is sensitive to touch and you can palpate the pain...I ache terribly in my lower ribs, shoulder blades, arm & leg bones, and I CAN NOT palpate (cause by pressure) the pain as it seems to radiate from within.

    My rheumatologist and neurologist are still looking for answers, but I was so relieved today to get a clear bone scan...even though I still ache.

    So, I'm wondering if I can be certain that I don't have lupus with the labs that I've had or if anyone has had the experience where the labs just took time to "capture"?

    Thanks to all for sharing your experiences!
    Gina

    Last edited by gina9871; 06-22-2006 at 07:42 PM.

     
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    Old 06-23-2006, 04:31 AM   #2
    VeeJ
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    Re: How many have tested negative...

    Hi, Gina. I'll start with the punchline first. I was Dx'ed with the SCLE "subset" in 2000 ( = subacute cutaneous LE). SCLE symptoms can extend across the whole SLE range; but in SCLE, it's believed that the odds for the worst problems (e.g., kidney & CNS) are lower than in SLE.

    I had problems from early childhood (pneumonia & encephalitis before age 5, also urinary problems). At 8, I had a widespread bullous rash (raised watery itchy blisters). At 13, widespread pain in joints, shins & other long bones, with fever, elevated sed rate, and WBC off. By early 20's, irritable bowel and weight loss. In my 30's, irritable bladder, migraines, and hair loss. In 30's, raised red "papules" on arms & torso. By early 40's, those papules started "morphing" into circles. For 4 years, I also also anemic.

    I saw vrs. local specialists = rheumies, dermies, urologists, and gastroenterologists. I was formally Dx'ed with IBS (irritable bowel) at 26 or so. In my early 40's, a local rheumie Dx'ed CFS & FMS. My ANA was tested ongoing, but I'm not sure what *more specific* autoantibody tests were also being run. I had at least 5 skin biopsies of lesional skin.

    I finally became LIVID and took myself to a Manhattan rheumie in summer 2000. I had a preliminary answer in, oh, all of 1 minute, subject to a final round of tests. My anti-Ro was by now clearly positive. BUT I honestly don't know whether it had just "turned", whether by nature it vacillates, or whether it had been positive for awhile but not tested for.

    What frustrated my Dx, I think, was that I was always *negative* for ANA, which I was told happens in the SCLE subset maybe 30% of the time. ANA is almost always positive in *SLE*, we all read. But I had a variant = SCLE.

    The Manhattan dermapathologist had me retrieve old skin tests from previous labs. Disgustingly, those had all been "grossly positive" for lupus for 5+ yrs.

    I suppose that for many people, there are multiple possibilities: (1) lupus, in some form, is already there but just isn't being recognized; (2) something else that can produce symptoms that overlap with lupus is going on; or (3) lupus is coming on slowly & gradually.

    QUESTION: Do you have anything going on that's unambiguous & can be tested for? (For me, these were rashes & anemia.) Such things, if you have any, are the most obvious springboards---and maybe try different drs? And if that doesn't pan out, could you go to a teaching hospital?

    I hope there's something here that can be of some help to you. Gina, I surely do sympathize! Truly. It's awful. Anyway, I hope you drop a line again soon. Bye for now, with my best wishes, Vee

     
    Old 06-23-2006, 01:57 PM   #3
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    Re: How many have tested negative...

    Gina-
    You and I could be twins. My ANA has never been higher than 1:320 in a speckled pattern, and my only other abnormal labs are a positive RA factor (never higher than 1:160) and IGM anticardiolipin antibodies positive (again at a low titer). I do however have 6 of the 11 defining characteristics of lupus, and have only recently (in the last two years) been definitively diagnosed. Every other lab has been fine in the last ten years. I have once had a very mildly low C4 level- but otherwise everything else is negative. I suffer mouth ulcers, leukopenia, arthritis, positive ANA- and have had a malar rash and a blood clot previously. Even with all this, all doctors have been relluctant to diagnose me until recently. I am now 36. It has been a long road to diagnosis, and plaquenil (which has made a HUGE difference in my fatigue level)- but I knew what I had long before they ever got around to agreeing with me.
    Good luck-
    pambyboo

     
    Old 06-23-2006, 02:42 PM   #4
    gina9871
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    Re: How many have tested negative...

    Quote:
    Originally Posted by VeeJ
    QUESTION: Do you have anything going on that's unambiguous & can be tested for? (For me, these were rashes & anemia.) Such things, if you have any, are the most obvious springboards---and maybe try different drs? And if that doesn't pan out, could you go to a teaching hospital?
    Vee,
    You're right in that I have a LOT of ambiguous symptoms but we didn't get a skin punch on the large rash that covered my front torso back in March when it occurred (lasted 2 weeks with 2 rounds of steroids) and the malar rash only lasted a few days. The headaches from hell are continuing but I've had an MRI and MRA that are clean. The rheumie is still looking though and I go back to see him next week.

    My "abnormal" blood labs were very low MPV (mean platelet volume) and my red blood cell count was just barely in the range of normal (low side) . WBC looked fine.

    The ambiguous fatigue and flu-like muscle and bone pain are the constants.

    We'll see what the new set of lab results look like next week.

    Thanks again.
    Gina

     
    Old 06-23-2006, 02:47 PM   #5
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    Re: How many have tested negative...

    Quote:
    Originally Posted by pambyboo
    Gina-
    Every other lab has been fine in the last ten years. Even with all this, all doctors have been relluctant to diagnose me until recently. I am now 36. It has been a long road to diagnosis, and plaquenil (which has made a HUGE difference in my fatigue level)- but I knew what I had long before they ever got around to agreeing with me.
    Pambyboo-
    Does this mean that you've been sick and thinking that you've had lupus for 8-10 years before you were officially diagnosed?
    Your titres were higher than mine are right now, so did yours start off even lower when you first became ill?
    I'm 38 and we do sound very much alike.
    My rheumie was surprised (as was I) when the labs didn't confirm the lupus, but he said that he's going to start me on plaquenil anyway. How long did it take for you to get any relief with the plaquenil?

    Thank you sooo much!
    Gina

     
    Old 06-23-2006, 09:13 PM   #6
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    Re: How many have tested negative...

    Gina, Your dr. sounds like the thinking type, starting you on Plaquenil. My local drs. & specialists refused to make any call at all, which meant no meds for years. My city rheumie could not believe it, when he saw how long they'd "treated" me, without treating me.

    I saw an article once that listed an enormous number of variants in lupus, how many ways labs can come out, yet still spell lupus. I bet many drs. look for only the "classic" results, and miss many of the variant presentations---just what they learned in med school circa 1970 or so...

    Anyway, here's to better days ahead for you! I'll keep watching for your posts. All my best, Vee

     
    Old 06-25-2006, 12:18 PM   #7
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    Re: How many have tested negative...

    Gina-
    I had problems while pregnant called "villitis of unknown etiology" that caused my girls to be classified as IUGR babies- born under the 10th percentile of weight. My OB knew at the time that it was probably an autoimmune disorder attacking my placenta, causing the villi attaching my placenta to my uterus to be inflamed- that restricted the blood flow and nutrients through the umbilical cord. I also had two miscarriages. All of my labs at that time were negative though, so they just shrugged their shoulders and said they would put me on heparin if I got preganant again.
    A year after my last live birth, and 6 months after my last miscarriage, I noticed that my right knee was swollen, and hurt so badly that I could barely walk. This lasted two weeks, and during this two week period I noticed a malar rash. I am in the health field and put two and two together. I saw my GP who did an ANA, and it was 1:320 in a homogenous pattern at that time, and my sed rate was elevated. He sent me to a rheumatologist who blew me off and said not to worry about it.
    So for the next 8 years I went with horrible symptoms- fatigue, achy/painful joints, mouth ulcers, malar rash periodically. I had a blood clot in my leg in 2001 which they attributed to my being on birth control pills. I saw a hematologist who saw my IGM antiphospholipid test was mildly high, and told me they weren't going to worry about it "yet". When my hands and fingers swelled so bad that I couldn't make a fist for a week, I saw my doctor again (different from the first one), who thought I had Fifth's disease (a common childhood virus). She placed me on prednisone for a week (I loved it- I felt great), and did all the labs for autoimmune stuff again. My RA factor was positive for the first time at a titer of 1:160, with my ANA positive still. My sed rate was also mildly elevated. She then sent me to a rheumatologist who said I obviously had "something autoimmune". He placed me on plauenil, which in a matter of two months had my fatigue level improved by 50%. I haven't noticed much improvement with the achiness. I have sought out two seperate opinions in the last two years, one at Mayo clinic who told me I had something autoimmune but it definetely wasn't lupus. I saw a doctor at the teaching hospital here, who said I did have lupus and antiphospholipid syndrome, which I got my rheumie here to agree with.
    So that's my story. Understand though that the doctor's prefer to label you as UCTD (undifferentiated connective tissue disease) because the insurance companies don't know what to do with that diagnosis. They wait until they absolutely have to to say you have lupus. It causes a lot of problems with insurance from that point on- that's why I waited so long for a diagnosis. And that is straight from my doctors mouth.
    Good luck. Let me know if you need anymore info.
    Pambyboo

     
    Old 06-25-2006, 12:23 PM   #8
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    Re: How many have tested negative...

    I know exactly what you mean by the pain radiates from within. It's almost like its so deep you just can't find it. Thats how my rheumy knows I don't have fibro, it doesn't hurt when you touch me, if someone could get to my pain by actually touching me it might feel good. It seems to be soooo deep inside you just can't reach it by touching.

     
    Old 06-25-2006, 02:02 PM   #9
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    Re: How many have tested negative...

    Quote:
    Originally Posted by pambyboo
    Gina-
    Understand though that the doctor's prefer to label you as UCTD (undifferentiated connective tissue disease) because the insurance companies don't know what to do with that diagnosis. They wait until they absolutely have to to say you have lupus. It causes a lot of problems with insurance from that point on- that's why I waited so long for a diagnosis. And that is straight from my doctors mouth.
    Good luck. Let me know if you need anymore info.
    Pambyboo
    Thanks Pambyboo.
    I can understand the reasoning and it could possibly explain this "Knowing" look that my rheumie gives me without saying "you definitely have lupus" but he's treating me with plaquenil anyway. I'm so sorry for the long road of pain and miscarriages that you've gone through. I can't possibly compare my situation to what you've been through since my symptoms just started in the last 6 months.
    Thank you so much for sharing your story.
    Gina

     
    Old 06-25-2006, 04:59 PM   #10
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    Re: How many have tested negative...

    Quote:
    Originally Posted by chasityb426
    I know exactly what you mean by the pain radiates from within. It's almost like its so deep you just can't find it. Thats how my rheumy knows I don't have fibro, it doesn't hurt when you touch me, if someone could get to my pain by actually touching me it might feel good. It seems to be soooo deep inside you just can't reach it by touching.

    Does your rheumy say that you definitely don't have fibro because the pain isn't palpable? Most of my pain is not palpable, but sometimes my sides (costochondria) are tender (but always painful from within) and sometimes my upper back is tender or painful if I brush firmly against something by accident. There is bone pain, too, but I can't recreate that, either. Since no one is telling me that I DO have lupus, then I was wondering about fibro, but this seems to be a distinct difference, true?
    Thanks, Gina

     
    Old 06-27-2006, 06:29 PM   #11
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    Re: How many have tested negative...

    Does anyone else bruise very easily, too? I've got about 6 bruises on my legs (and toe of all places) that I can't recall an accident to cause any of them and they're taking up to 4-6 weeks to disappear. They're kind of painful, too.
    Is this just a fact of life?

     
    Old 07-14-2006, 09:15 AM   #12
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    Re: How many have tested negative...

    I was dx 10 years ago, based on borderline elevated tests, but more on my symptoms which fit the criteria. Last week I had another batch of tests, and they came up "negative"; my symptoms have worsened over the years.

    Have no trust in many tests that come up negative; especially when you have the symptoms.

    Frustrating!!

     
    Old 07-14-2006, 02:30 PM   #13
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    Smile Re: How many have tested negative...

    Hi Gina,
    I wish I knew the details of my labs like some of the others here (I am really bad about being a patient... don't keep tabs on anything... hate meds, etc...) but I do know that my ANA was positive and speckled, then borderline and speckled, and then really high postive and speckled... back and forth, depending on how "flary" I am.
    I started Plaquenil about a year or so ago (again, I really don't know how long it's been... I suppose I've refilled the Rx 4 times at 3 months a piece, plus the few refills of one-month supplies... so it's been over a year) and it took about 5 or 6 months for the full effects.... it worked famously for me until recently... now my flares are more common and getting worse. Last time I saw the doc he wanted to "discuss more aggressive medications" and I told him "no". I will see him again Monday, and I think I'll have a harder time saying "no", because I feel so awful lately. We'll see!
    Anyway, sorry for rambling... but it the ANA is an elusive character. One of my docs suggested taking it 2 times a month, to track it... seems they know when a flare is coming based on the patterns rising. Me? I'm too lazy and disconnected from my illness to go that far... yet.
    Good luck, and oh, it took me years to be diagnosed... but in retrospect, I have had connective tissue problems since childhood.
    --Kristin
    P.S. I see that you are also bruising--yup, a big part of my life. I have at least 5 or 6 good sized bruises on my legs right now... once I had so many I couldn't count--it looked like fingertip bruises covering my legs and feet. Family practice doc freaked out. Rashes, itchiness, bruises, sensitivity (to touch, to light, to sound)... all part of the ball game.

    Last edited by Kristin67; 07-14-2006 at 02:33 PM.

     
    Old 07-14-2006, 03:29 PM   #14
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    Re: How many have tested negative...

    Thanks Caroleye and Kristin67. The timing of your replies were great as I just saw my GP a couple of hours ago. I am still seeing a Rheumie but nothing has turned up yet to clinically support by aches, pains, rashes, etc.
    I saw my GP today as a follow-up from last week when my pain scale hit about a 9 (I was embarrassed to call it a 10 because I was afraid the doc would think it an exaggeration - but it was unbearable).
    The flu-like pain is my muscles & bones had increased and my back, just slightly below my shoulder blades and in between them was BURNING! That must've been the magic word because he presribed a new drug called Lyrica. If anyone had told me that they could go from a 9-10 pain level to a 3-4 in 36 hours on this medication, I wouldn't have believed them. It was amazing.
    I had a fantastic honeymoon period for about 3 1/2 days, then started having breakthru pain to about a 6-8 pain level, but definitely not a 10 and only sporadically. So today, my GP upped the dosage from 50 mg 3x/day to 75 mg.
    I may post a separate question to see if anyone else has tried the drug and/or if it's helped.
    Back to the topic, my GP said that we're going to keep testing ANA titres and other labs every quarter and not stop just because I've found a pain reliever. Obviously something is causing all this stuff.
    It helps to understand your experiences and know that not everyone finds the lab results just because they're looking. I'm so sorry that you feel awful and it's awful when you can't get relief. It does feel like my body is playing hide-n-seek with the pain and the blood labs.
    My bone scan also turned up negative which was a HUGE relief. My Neurologist is currently testing for Myasthenia Gravis and said that if we don't find anything in this set of labs, then we'll do an MRI on the entire spine since I've only had the neck and brain MRI so far.
    Thanks so much for your replies and sharing your experiences.
    Best of health wishes to you both~
    Gina

    Last edited by gina9871; 07-14-2006 at 05:14 PM.

     
    Old 07-16-2006, 09:27 AM   #15
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    Re: How many have tested negative...

    I'm glad you found some pain relief. That sure does take the pressure off of things.
    Please keep us posted (haha pardon the pun) on how you're doing.
    -Kristin

     
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