Discussions By Condition: Autoimmune Disease

ANA testing???

Posted In: Autoimmune Disease 14 Replies
  • Posted By: mforbes1974
  • January 11, 2007
  • 05:01 AM

Hi, I'm a 32 yr old female with almost all the symptoms of lupus. However, when I first went for bloodwork for autoimmune disorders, I had only a couple of the symptoms, joint pain, swelling, hypermobility and some skin problems. I didn't have a follow-up appt until 5 weeks later, which is now.
I now have alot of symptoms in addition: vasculitis, reynauds, lesions, swelling all over, UTI's, eye problems, twitching, hand tremors. My question is, since I wasn't having a flare at the time of the tests, which came back neg for ANA, could I still have it and it just may not have shown up back then? I was really convinced that I had lupus after the amount of research I have done, but still think it could be RA or lyme also.
Can anyone help?

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14 Replies:

  • I was hoping that I someone might have some insight to my situation, but I'm not sure, I have 2 posts on here and no replies although several views. It has been a couple days, does it usually take awhile? Plz help if u can. I have read how hard it is to get a diagnosis for an autoimmune disorder, since all the symptoms seem to mimic eachother and other diseases. I'm fairly sure its at least RA, but have almost all the symptoms of lupus too.
    mforbes1974 6 Replies
    • January 12, 2007
    • 04:03 PM
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  • with multiple autoimmune disorders i know how hard it is to get diagnosed and get help so don't give up.i have an rx for b12 shots which help keepmy sys in good running condition. but i also need to exercise and lift weights along with eating great. not something i have been able to always do.find a doctor you trust and who is willing to work with you. do complete blood panels and let him know that when you are having an episode you want to be able to come in right then. me for example-my dr would say come in the next time you break out but maybe it would disappear the next day even.a board certified ra doctor may be best equipped, however, neurology and endocrynology are also involved, etci am going thru a severe time myself in search for answers, so i know how you feel. i have a great councelor who has kept my head on straight while all this stuff has been happening. he is the ONLY one who kept listening and encouraged me to keep seeking medical attention. he was the one who helped me get proper diagnosis for my add and congestive heart failure. so i also recommend you find someone to support you emotionally w/positive....
    Anonymous 42789 Replies
    • January 26, 2007
    • 01:00 AM
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  • if you want to talk further let me know...
    Anonymous 42789 Replies
    • January 26, 2007
    • 01:01 AM
    • 0
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  • i also had all the symptoms of lupus. from seizures to rashes. every time my doctor did labwork my ANA came back negative. he tested me for lyme, which was also negative. eventually, my rhematologist sent me to an immunologist because of some off labwork. to make a long story short, my immune system is very weak and doen't have the antibioties that will actually give me a positive ANA. the doctors decided with that, i do indeed have lupus and now give myself weekly infusions of vivaglobin for common variable immunodeficiency. no matter what, don't give up!! if you want to talk to me, e-mail me at sunflower21@netzero.net. my name is karen.
    karen2 7 Replies
    • January 28, 2007
    • 03:07 AM
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  • Thanx so much for the replies!!! This is the first time I have been online to check responses in awhile. Since my last post, I went back to my GP and he really made me feel alot better about the bad experience with the 1st Rheumatologist I saw. He actually said out loud that I definitely have some kind of Rheumatic disease, which he is diagnosing as mixed connective tissue disease for the time being, until he can get me into a better specialist. It really lifted alot off my shoulders just to hear someone tell me I wasn't crazy!! I know that a Dx is hard to come by in these conditions. That seems pretty common. He put me back on the antiinflamm's, which helps with the joint pain and swelling (most of the time), but it's the fatigue that really knocks me down. I would love to communicate with you both if you have further insight. I really believed that it was Lupus, I have almost every symptom!, But I also know that it could still be something else mimicking lupus, etc. My GP has sent a refferal on to St. Louis University, which is the nearest major city near me, about an hour or so, I live in IL. They are supposed to be in contact with me soon, if we can work the insurance info out. Anyway, my e-mail is mforbes1974@msn.com , feel free to e-mail me directly, I reallllyyyy appreciate that I finally got a response. HAGD!!!
    mforbes1974 6 Replies
    • February 1, 2007
    • 05:05 PM
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  • 5% of people with Lupus will have a neg. ANA. You should be tested every 6 months. I learned from hy hematologist that you can have Lupus for years before a diagnoses is ever made. You could be one of the 5%. I hope you feel better soon.
    Dee882003 4 Replies Flag this Response
  • I have been reading these posts b/c I too am searching for answers. For me, ANA, Lyme tests have come back negative. I have had chronic pluerisy & respiratory infections, endomitriosis, joint pain.. especially in hands and feet with swelling, can't get out of bed fatigue, pain when I wake up in the morning where I have to stay in bed for a while until I can physically get out of bed, mouth ulcers, my temp has also been running on the lower end, with the lowest being 96.1, I have a liver lesion which is still being tested, chronic fatigue and fibromyalgia. I went to my 1st rheumatologist who was just awful. I felt like he blew me off and did not listen to my symptoms. He said he does not think I have something autoimmune, although my MD thinks I might. I am going to a new rheumatologist this week and hopefully I get a little farther. 3 days ago, my pleurisy flared up again. It just hits me and I feel like my lungs close up. I did not have to go to the er this time b/c I have a better idea of how to manage in crisis as I now have a nebulizer at home. My DR called in some prednisone which I got immediately and I seem to be more stable this morning. I am looking for help and answers b/c it is getting very difficult to manage all of this, especially when no drs seem to know what is happening. I have been constantly sick for 7 months now, but started with the pleurisy over a year ago when I had pneumonia. Everything went down hill from there. I seem to catch every illness that I am exposed too. I am only 29 years old, a mother of 2, fairly healthy (haha) other than all of this mess. Has anyone experienced what I am. Please help...Krisy
    Anonymous 42789 Replies Flag this Response
  • Hi Krisy, I understand how you feel. A few years ago I had many of the same symptoms you are experiencing. My family doc thought it was an allergic reaction at first, then he started to think maybe autoimmune. He sent me to a rheumatologist that was a total ***k and blew me off. I found another rheumologist that diagnosed me with lupus. There are many more parts of my story-- too many to write here. If you would like to talk more, e-mail me at sunflower21@netzero.net. If I don't hear from you then please find a doctor that gives you answers. Don't give up. There is a doctor that can help. Best of luck. Karen
    Anonymous 42789 Replies Flag this Response
  • Thank you for your reply. Did I mention that I have a benign lesion on my liver. I just had the MRI and do not know the details yet. The think that plagues me the most if Chronic pleurisy and extreme shortness of breath. Daily life is almost unmanagable. I have been seriously ill for 7 months now and am still looking for answers. I feel that it might be lupus.. hopefully todays appt will bring some answers.Krisy:cool:
    Mrsparedes2004 9 Replies Flag this Response
  • I have just recently had a positive ANA test but no other blood workup abnormalities. I do have a few symptoms that hint at something autoimmune such as sun sensitivity (I get a rash, but not the classic "butterfly rash" of Lupus), mild arthritic symptoms ("only" in my early 40s), dry eyes and mouth, arm and hand numbness. My Dr. and a couple other Dr. I know personally could not answer the question of what % of people with a positive ANA have no autoimmune issues because they said nobody really knows. Any thoughts on how much weight to give a positive ANA when other symptoms are mild-moderate?ThanksRW
    Anonymous 42789 Replies Flag this Response
  • Krisy,So sorry for what your going through...I have had problems i.e. pain from hips to knees, extreme fatigue, mouth ulcers, fevers... among others. I had my gall bladder out 1 year ago and it sent my body into an autoimmune response. My ANA is positive 1:650 ratio my complement 3 is low...I have been to tooo many doctors to count...including University of Michigan and Cleveland Clinic. It's VERY hard to be going through all of this and Doctors saying, "Well, it might be fibromyalgia, might be chronic fatigue, might be lupus, but not full blown yet. I am a mother of 2 young children, and I just want an end to this...at least a diagnosis.
    Anonymous 42789 Replies Flag this Response
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  • Thanks for the reply.. I was diagnosed w/ Fibro.. but my Rheumy is still poking around b/c although I had a neg ANA.. I have so many lupus symptoms. I just had a full body bone scan a few weeks ago and am hoping that will shed some light on whats going on. Hang in there. I take my good days with the bad. I seem to be in more of a critical condition in the winter time. I get pneumonia and have chronic pleurisy.. I didn't think I was going to make it through this one, but I did.. Hopefully I can find some more answers before next winter, b/c it just gets worse & worse.
    Mrsparedes2004 9 Replies Flag this Response
  • It's great to find out that I am not the only one who has been given the run-a-round going to one dr. after another to try and find out what is wrong with me. Today I found out that I may have Glaucoma. That is just great!!! For months now I have had one problem after another. Periphial Neuropathy on my left side with sores/ulcers on my back, left arm, neck, and chest. Dermatologist is calling it Prurigo Nodularis. Bronchitis with fluid in my left ear. Asthma. I have been diagnosed with Fibromyalgia, MCTD, Sclerderma, RH and/or Lupus. Test positive for ANA with a Speckled Pattern. Dr.'s are still not exactly sure what I have. I have a long list of other Diseases.....Hyperglycemia, Hyperthyroid, Dysautonomia, MVP, Gastroparesis, IBS with Ulcerative Colitis, and the list goes on. Does this sound familiar with any of you??? You can contact me at mghampton@yahoo.com
    Anonymous 42789 Replies
    • October 3, 2007
    • 10:27 AM
    • 0
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  • Hi, I'm a 32 yr old female with almost all the symptoms of lupus. However, when I first went for bloodwork for autoimmune disorders, I had only a couple of the symptoms, joint pain, swelling, hypermobility and some skin problems. I didn't have a follow-up appt until 5 weeks later, which is now.I now have alot of symptoms in addition: vasculitis, reynauds, lesions, swelling all over, UTI's, eye problems, twitching, hand tremors. My question is, since I wasn't having a flare at the time of the tests, which came back neg for ANA, could I still have it and it just may not have shown up back then? I was really convinced that I had lupus after the amount of research I have done, but still think it could be RA or lyme also.Can anyone help? I've read, and also been told by a doctor, that ANA tests are not extremely reliable. False negatives, and also false positives, are common, and, if positive, the level of antibodies does not necessarily correlate well with the severity of symptoms. For people whose symptoms include some kind of lesions, the good test may be a biopsy followed by immunofluorescent testing. Not all labs can do it. In your case, maybe there's nothing to biopsy, but the answer to your question is yes, you can have a negative ANA test and still have an autoimmune disease. I hope you're finding some good help.
    AgnosticJaz 23 Replies
    • October 7, 2007
    • 03:19 PM
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