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Thread: Confused, as is my doctor. Please help!

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    Unhappy Confused, as is my doctor. Please help!

    Hello all! I am new to this board. I was hoping someone could be of some help to me. All of this lupus/ANA lingo is very new to me and is all so very confusing.

    I have had Raynauds for years and started seeing a Rheumtologist in July. In January she wanted to run some blood test to see if I had Primary or Secondary Raynauds. She tested for a handful of things, Lupus Anticoagulate Reflex, IgG, IgM, IgA, Sjogrens, ANA Direct, Anti-DNA, Smith Antibodies, and RNP Antibodies.

    Everything was negative EXCEPT the ANA Direct and RNP Antibodies. My ANA Direct was "positive" and my RNP was 5.2.

    She retested to see if they were a false positive. The results came back with the RNP being 4.1, ANA Direct being "positive" and the ANA by IFA was "negative".

    My doctor doesn't understand how my IFA could be negative while the ANA direct and RNP are positive.

    Does anyone have any idea what this could mean? Why would there be a discrepancy with the immunoflorence test while the ANA Direct is positive?

    The only symptoms I have right now are really bad circulation from the Raynauds, Cold Urticaria (I am allergic to the cold, my entire body breaks out into hives), migraines, and really bad back pain. My stomach doctor did diagnose me with Chronic Gastritis, Reflux and Esophogitus. Not sure if that is common or helpful.

    Do you think theres a chance the RNP and ANA Direct could be false positives? I just dont want to start taking these drugs until I am sure I actually have something wrong. My doctor just doesn't seen very confident in this diagnosis.

    Thanks for the help!

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    Hi BBall2424 and welcome to the WHL and it's lovely to have you with us.

    I have secondary Raynauds and as soon as my dermatologist new that he ran some tests and also refered me to his client in the rheumo department. Refering all the symptoms your going through i'm suffering the same as it's just so painful and when heat is about cover yourself in 50 block and keep to the shade because it triggers rashes off very quickly and headaches can be alot worse plus irritability.

    It sounds to me like you need sending to a rheumo specialist and more bloods done and the reason why your both confused is because Lupus loves playing with your bloods and it makes the bloods fluctuate, in other words you may have something but it will show on the results negative and testing the bloods never end.

    I was really low for 6mths and my blood kept saying i did'nt have anaemia, then a letter dropped through the door off the last lot of bloods i had showed i had anaemia and now i'm on folic acid tablets and B12 Jabs for life.

    I do recommend you push it furthur with your dermatologist to send you to a Rheumo specialist because mine did loads of tests and when they was taking my blood at the hospital some names they'd never heard of.

    I wish you all the best Terri xxx

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    I am always a bit confused about test results. Is it possible if you can make another appointment and ask if all the test results can be explained again, and the implications of the results. Make sure you have a list of questions written out before hand so your doctor knows that you are taking your health seriously
    Diagnosed with Lupus - 22 June, 2010

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    I am afraid that I am still new to all of this too and the labs don't mean much to me...but symptomatically just about everything you listed is a possible symptom of lupus. Lupus is really hard to diagnose as there are so many variations. I agree with others, either push to see another doctor or at least ask for clarification or follow-up. Perhaps your doctor will now some research and then call you in when they understand more about your results?? Good luck and I hope some of the other "veterans" of this site will be able to help you.

    BTW, my main symptoms are fatigue, migraines, sun sensitivity, raynaud's and mouth ulcers.

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    Lots of people can be sero-negative (bloodwork is negative), but still have symptoms of autoimmune diseases.
    You definitely have some antibodies in your blood. I don't remember what the RNP antibodies signify, but hopefully, SaySusie or Tgal will be able to tell us.
    Raynauds is also commonly linked with other AI diseases. It is quite often the first symtom before Sjogren's is diagnosed.
    I agree with the others - write out a list of questions and talk to your doc.
    Welcome to WHL.
    Hugs,
    Marla

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    Hi BBall2424,

    How are you feeling in yourself since you posted the thread?? and have you managed to get intouch with your Doctor.

    Takecare Terri x

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    OHHH I just wrote this long post and I hit the wrong button and it is gone! Let's try again!

    I am sorry I didn't get to this yesterday but I was sleeping since I stayed up all night to watch the Royal Wedding LOL

    I know this is a confusing time right now but AI diseases (Like Lupus) are seldom easy to diagnose simply because there is no real test for them. There are tests that can help point the doctor in the right direction but it takes testing and consultations to figure out what is going on.

    As Marla said, it is possible to have all the tests come out negative and still have an AI disease. It isn't often but it does happen. The ANA test is a very general test that can point the doctor in the right direction for the next round of testing. Once the ANA shows positive they will break it down further to tell the doctor what pattern it is and then to get the Titer number. It is not a test for lupus but once again it points them in the right direction.

    The RNP is a test that can come up positive for several things, many of them being autoimmune in nature. Mixed Connective Tissue Disease (MCTD), Rheumatic Diseases (which most are autoimmune) Chronic Liver Failure and many other things can cause an elevated RNP. This test doesn't answer the question of what is wrong because nothing does with AI diseases but it gives them a better direction to look.

    I hope this answered your question and please keep us posted on what the doctors find out.
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    RNP can signal MCTD in high levels as your stating, Lupus in lower levels. I have this on an ANA direct, the IFA shows my ANA as 1:640 homogenous and nucleolar. I think you should have the IFA tested at a different lab. I also have the GI issues but I don't think rheumatologists account chronic GI inflammation as an immune attack to your body. Raynaud's, definetly yes. They need to follow you over time, watch your WBC's, RBC's, platelets, inflammatory markers, and none of this is continuous in your blood work, certain things can just show up from time to time.

    I didn't know RNP was high in liver disease. I guess that is why I got the round of testing on that one, it all came back good though.

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