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Thread: Can you get a diagnosis with a Positive ANA Negative ESR

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    Default Can you get a diagnosis with a Positive ANA Negative ESR

    Do any of you have Lupus with normal ESR?
    Last edited by merryalliss30; 06-05-2011 at 01:43 PM.

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    others will help with your questions.
    i can say that i have regular muscle pain.
    i have suffered with lupus, and other problems for over 30 years.
    muscle pain is normal for some of us. not everyone feels the same symptoms.

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    This always makes me so mad! Lupus is not a diagnosis based on one group of test but it is a cumulative diagnosis which means that each test result or symptom is added on top of the other and eventually, when you meet the criteria (which doesn't mean just blood tests) a Lupus diagnosis can be made. Too often Dr's don't understand how to diagnose Lupus and want to take blood work and then say "OK, No Lupus because this test isn't right". Often times are blood work changes due to the medicines we are on, not being in a flare or for reasons unknown. Lupus is a disease that is known for test fluctuations so the Dr sounds like an idiot if he wants to take the Lupus diagnosis away because of the results of 1 blood test! There is NO test for Lupus. My ESR has never been high but my C Reactive Protein is off the charts (another test of inflammation).

    Did you say that your doctor doesn't believe you can have Lupus without high fibro markers? Maybe I am not reading that correctly but if that is what he said then I would ask him if he understood that Lupus and Fibro are two completely different diseases! As Steve said, each of us manifest the disease in different ways. Stand your ground and remember. You hired the doctor so you can fire him too!

    one more thing.. Welcome to WHL! We are so glad to have you!
    Mari

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    Mari as pointed some good views out, these rheumo specialist's are terrible but like yourself i have severe muscle pain and spasms besides inflammed joints and red swelling, the spasms hit me the worst.

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    No that is not what I said. They said that I cannot have Lupus without high inflammatory markers. Like ESR, RF, CRP, whatever. I've had alot more to deal with than just muscle pain. My biggest problem is severe fatigue. That there makes me feel like I have the flu every moment of the day, everyone knows how tired you are when your sick. Well it's not so much a sleepy issue, I am just exhausted 24 hours a day. I can't work because of it. It's persisted for 14 years. I don't have joint problems, no rashes. I am however sensitive to the sun, and I avoid it 99% of the time. I burn too easy, I break out in blisters, I've seen a malar rash on my face after using tanning beds, but it eventually went away, and I don't use tanning beds anymore. I have the mouth sores. Neurologic including the psychosis, not that I am crazy. But I have seen and heard things related to paranormal. I don't believe in it, but I still have had the experience of it many times. There's only 4 in the Lupus criteria I can prove unless I want to sunburn (not!). I have also had hydronephrosis, kidney stones, and kidney infections, just getting over one, and the pain doesn't want to go away now, but I don't have kidney disease. My RNP levels are high enough to be considered MCTD but I do not have the criteria for that. I have muscle weakness, but lack any swelling or raynauld's. My blood pressure is starting to get high but my heart is okay. My lungs don't seem to be working quite right but my PCP doesn't want to look into it. I have GERD, gastrointestinal problems, and bladder problems, but nothing else apparent really. Horrible pain with my spine. Exercise inflicts joint pain, it gets worse the more I exercise, cannot build up a tolerance to walking. I have bad congenitive issues, headaches, feel like I am eat alive with a nerve disease, burning, tingling, spasms, twitching, cooling sensations, shooting pains. My feet, legs, and hip go numb daily. Mainly, I am just tired of being tired. My PCP says I have fibromyalgia, and he doesn't believe me when I tell him I'm sick. His actions speak louder than words, he doesn't want to treat me with medications, he doesn't want to scan me no matter how bad my problems get. I didn't have a chance when I saw the rhematologist this week, all she could do was talk about fibromyalgia and depression, and telling me how I should take an antidepressant every day. Well she can take one everyday, I'm not going to. I saw my neurologist after I saw her and told him she said my ANA/RNP levels were meaningless, well he said she was meaningless. I told him she said I couldn't have an autoimmune disease if my inflammatory markers weren't high. He said it was a lie, that he's seen plenty of Lupus patients that never had that. He said he didn't know what school she went to, but she must of went to the wrong one over this, because she didn't have a clue what she was talking about. He wants to send me to a Lupus clinic out of state, but I'm not going to be able to get anyone to take me. I also responded to plaquenil for several months, the stuff gave me my life back, but then I caught a bacterial infection, it quit working with the fatigue, still helped everything else, my rhematologist said I couldn't have an autoimmune disease because it quit working (for 2 months, then I quit taking it because my fatigue wasn't responsive to it anymore). Also had an antimalarial drop my RNP levels by half as it was making me feel better. I guess that is meaningless too.

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    The Rhuemy is wrong. As I said, there is NO test that can prove Lupus, not even a Lack of of high inflammation. All of our bodies handle it differently and it just depends on the state of your body at that moment. Some meds can change the test results, days where we don't feel quite as good and a host of other things.

    I say keep pushing. If this doctor won't listen then fire him and find another. You shouldn't have to live like this and don't let them make you think you are crazy!
    Mari

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    That's exactly right. I have my neurologist to back me up on this one. He believes I have it and he might be able to find someone else since I couldn't go to the lupus clinic. The rhematologist I have, I told her all I wanted was a chance to see if those medications would help me feel better, she's not at all willing if my inflammatory markers come back normal. I couldn't even really discuss autoimmune issues with her, she seemed to want to blow it off, and all she could talk about was fibromyalgia and depression. She has no idea if I meet the criteria for Lupus, she didn't try finding out. All she was concerned of was joint pain and elevated inflammatory markers.

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    it sounds like she's not the rheumatologist for you. or for anyone else who doesn't look sick but is. she sounds too "old school" - if you don't see it, it must not exist - and that isn't helping you. I think the neurologist sounds very caring and compassionate and is sending you on the right path. Maybe he can recommend a specialist closer to your area. It sounds like he very much wants to help you. You should also print out that long explanation and stick it in your file of things you take to the dr. It is very helpful to have something like that to explain exactly what you are feeling experiencing when you are at the doctor.

    Mari is right - there is no one test to diagnose Lupus. It's a diagnosis of eliminations. The thing is your rheumy clearly doesn't want to work on eliminating. You need a doctor who will work with you and make you feel as important as they are in the medical decisions. The reality is you are as important as they are. You know your own body better than them. You know you aren't crazy so why keep seeing someone who is telling you out and out you are?

    As far as the depression meds and fibro - there are several members here (and I think Mari might be one) who have BOTH Lupus and Fibro. You could be one of those people too. Many of them are on mild anti-depressants b/c that HELPS the FIBRO. It's not to help your mind b/c your mind isn't what is needed that med.

    If it were me in your shoes, I would want a second opinion from a new rheumy recommended by the neurologist. I would ask the new rheumy to run all the blood work all over again (knowing you can't rely on just bw for a dx) and to give you a complete evaluation. I would make sure to ask in that first meeting what their experiences are with AI diseases and what is their philosophy of treating the patient and see if you think you two could gel. I would specifically ask them to after they evaluated me what their opinion of the previous rheumy's opinion of Fibro is and if it is the same which course of treatment they would recommend.

    So many of us don't stick with the first rheumy we see because they often don't listen to us and just slap a label on without looking at the whole picture or because there is a personalilty disconnect or because we just don't trust them. So many of us don't have a second specialist who does believe in us that we connect with and trust. Stick with that doctor. They will help you get far on this path you're on.
    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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    She did a test on me checking for tender spots in my joints and such, I thought she was doing it to see if I had autoimmune pain. I had no tender spots where she checked me. She was checking me for fibromyalgia wasn't she? I heard if you take NSAID's, it can lower your ESR. I've been on NSAID's for along time, aspirin, advil, mobic, & right now ibuprofen and toradol injections. I guess they don't look at that huh? Or if your in a flare at the time they check it, I was not in a flare when she did my blood work. My pain does get worse with a flare, but it's not the big thing, the big reason I can't drag my butt out of bed, is because the fatigue & sleepiness gets so ridiculous, that I just can't. Do any of you get that with a flare or just the pain issue? I saw my rhemy on monday, she did a urinalysis for me, though she said she doesn't deal with kidney issues, which seems funny to me if that is the big toodoo at diagnosing Lupus. She doesn't even do a urinalysis on her patients as an initial checkup, anyone see anything wrong with that? Since last tuesday it's felt like my ureters and kidneys are swelling, and the burning in my kidneys was awful. I got loose bowel movements for a couple of days, saturday, I went to burning all day with urination and the kidney pain trippled, sunday it attacks my bladder, burned only half the day. Monday night I vomit. Wednesday I burned twice, it takes up to a minute for my urination to start now, that started today, only burned once today so far. I can't tell if it's an ongoing infection or what. They didn't give me the results that day. I called yesterday and she said she'd fax them over to my PCP cause the doctor had to sign off on the results the next day before I could get them, that way I could get them sooner. They didn't fax them. Still waiting on another return call. Who leaves you with kidney problems for that long? By the time they get around to me, it's probably not going to matter. And I know I need a new rhematologist. I will eventually get another one I guess.

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    I went to urgent care this evening. He asked me where my pain was, I show him, he says that is not my kidneys, it's lower back pain, pain is in my sides where your tummy bends, into my back so many inches across, on down, below my ribs. The other pain feels like my ureters is down lower in my back. He checks my lung area on up, checks my front sides & bladder, but not where I'm hurting. My urinalysis looks okay. I've had kidney stones, I know where your kidneys hurt, I'm not some kind of idiot. Maybe it's not an infection, but if they weren't inflammed, they probably wouldn't be burning, and it feels like they are swelling, but no one wants to do anything. I literally hate doctors.

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