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Bloodwork came back negative

Posted , 31 users are following.

susan0217
susan0217

My doctor did bloodwork to check me for Sjogren's and of course it came back negative. I am so upset because I have every symptom of it. I just knew they were going to call & tell me they finally figured out what is wrong with me. What can I do if I have all the symptoms but bloodwork comes back negative for it? My husband thinks I should just suck it up & that I am just lazy when I need to take a nap. I know he thinks I'm a hypochondriac. I just want to get a diagnosis and be able to try to treat the condition and finally be able to know what is wrong, and be able to show my husband there's a reason for everything. I don't know where to go or what to do from here. Are there doctors that will treat the symptoms of SS or do they have to have a positive blood test?

2 likes, 85 replies

85 Replies

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  • r34721
    r34721 susan0217

    Posted

    Well, I have a positive SSA antibody test, 115 with normal <100, and the rheumatologist says I don't have Sjogren's...

    What I really want is a trial of Medrol or prednisone because that is the ONLY time I have felt healthy in the last 25 years, when I was on a Medrol pack or taking prednisone...why doctors are so afraid of a trial of steroids to see if symptoms decrease is beyond me - yeah, I know it is dangerous to be on steroids forever, but to try and see?

    I actually sleep BETTER on steroids, and do not get insomnia at all!

     

    • diane03050
      diane03050 r34721

      Posted

      I have been on a trial dose since 1999.prednisone is dangerous Yes for infection and thin skin etc.  Started on 50 mg down to the 5 mg  I have multiple problems but the Dr's are nervous to stop the 5 mg a day.  I would think they have a reason maybe other symptoms you may have    I feel I can work better with 10mgs The Dr's s think they are dangerous for me  I have so much things wrong with me and many surgeries  So being a person on prednisone. I think better not to be on prednisone at all  Good luck with this

  • r34721
    r34721 susan0217

    Posted

    To the OP's point, I wish there were doctors who would at least try to treat.

    I used to think it was good when a doctor referred me out, but I have been referred out so many times, and to specialists in the same field, I wish my GP would just give me a trial of Prednisone.  Maybe it will be for a long time, but my condition is deteriorating so I don't know the alternative sad

  • pauline10110
    pauline10110 susan0217

    Posted

    My GP ran blood tests that came back negative. I demanded a referral to a rheumatologist, because the aching and fatigue, along with dry eye and mouth became unbearable. Nothing showed up on my blood work from rheumatoid doc, but my symptoms were such they ordered a lip biopsy. ( the specialist said they run a more detailed blood panel than the G P). The ENT doctor noticed the inflammation right away.  From what I understand, the tests don’t always show a positive result. 

    I have just started the generic plaquenl. It is supposed to slow down the immune system attack. 

  • r34721
    r34721 susan0217

    Posted

    I want to note that I happened to have two sets of anti-SSA and anti-SSB tests done within a few days, and the results were the following:

    SJOGREN'S ANTI-SS-A<0.2 0.0-0.9 AI NORMAL Final RN

    SJOGREN'S ANTI-SS-B <0.2 0.0-0.9 AI NORMAL Final RN

    and

    SSA Autoantibodies   115 AU/mL <100 AU/mL

    SSB Autoantibodies19 AU/mL <100 AU/mL

    I understand from reading this site that 115 could be considered equivocal, but I have dry mouth and dry eyes, along with multiple symptoms that match the Sjogren's profile.  And it looks clear to me that the methods must have been different because the tests were literally within days of each other.

    The first rheumatologist said that I have fibromyalgia, and sent me to a pain specialist who specializes in prednisone shots only, despite my cognitive symptoms.  The second rheumatologist ignored the positive/equivocal anti-SSA and said everything is normal.  

    Since I have cognitive symptoms, I really would like to get on oral steroids just to see if they clear up.  It's scary to think they might get worse, they are frightening already.

    I don't think the OP's situation is unusual, but feel like doctors are very worried to try medications without a piece of paper in front of them that says "positive".

     

    • diane03050
      diane03050 aitarg35939

      Posted

      I feel every Dr is different. My Rheum Dr said everything neg now.   So your muscle dis  is dormant and you don't have Sjogren's Syndrome.  I have been to 8 diff Dr's. and the 8 says SS. So I tell you,  you really have to find a Dr by how you feel. Not that you find someone that just yes's your theory.  I went t diff types and never mentioned what I thought One Dr. after I sad could it be SS.  He never heard of it.  Plus I have been on prednisone since 1999  Nothing helps it makes things worse.  Just my thought   I know nothing really helps except what you think.

  • valerie92179
    valerie92179 susan0217

    Posted

    Hi Susan0217.  I was diagnosed with Sjogrens ten years ago.  My bloodwork came back negative as well.  My rehumy knew I had all the hallmarks of Sjogrens and therefore made the diagnosis.  Also had severe arthritis in my right thumb joint.  Arthritis goes along with this as well.  Was referred to a hand specialist and had total thumb joint replacement on the lower part of my thumb.  It took a full two years before I could totally use it without a lot of stiffness.  Best thing I ever did.  Maybe you should seek another opinion.  Best of luck.
  • donna57006
    donna57006 susan0217

    Posted

    My bloodwork came back negative as well and I have the symptoms of not salivating, no tears, hoarseness, joint and muscle pain, fatigue.  I also have Hashimoto's disease.  I have a referral to a rheumatologist and I am aware a lip biopsy can be done.  I am also taking Pilocarpine to help me salivate. It is unbelievable that the blood work could come out negative and I still have the symptoms which have been getting worse.  See a rheumatologist as they specialize in autoimmune diseases and do have other tests.  Blessings to you, donna

  • christine16109
    christine16109 susan0217

    Posted

    I have had many of the symptoms of Sjogrens that have been steadily developing over the past 4 years. My dry mouth and dry eyes developed in the last 6 months. What's driving me crazy is that all my labs, including ESR and CRP, were negative. But the muscle and joint pain are so bad some days, and the pain migrates all over. Will even wake me up at night.

    I plan on seeing a Rheumatologist anyway, to see if there's anything else going on. But I'm so frustrated at this point.

  • michele01724
    michele01724 susan0217

    Posted

    Hi! I see that this was quite some time ago but I have been trying to get to the bottom of my pain for so long. originally I was told lupus and that was in 2016. I was sent to a different rheumatologist and he test me and turned out it was celiacs. I have always had very low Vitamin d and b12. in 2018 I was diagnosed with thyroid cancer and had a thyroidectomy and part of my parathyroid removed. I still have low vitamin d and the dr. is still trying to balance my thyroid replacement therapy. I take otc for very dry mouth (I have for yrs) and went to eye doc because vision was so blurry and tears just run down my face..now I dont produce tears. he suggested its sjogren's but it appears all bloodwork is negative. my joints are so bad, my skin hurts and flares up. my hairs is falling out. all things I can't make up but the rheumatologist seems to believe it's just "depression ". I need help!

  • jo69134
    jo69134 susan0217

    Posted

    Susan,

    I have just about every symptom of Sjogren's, but my blood work also came back negative. My Dr also tested me for Thyroid disease, that also came back negative. I am so frustrated, and just want to know what is going on in my body. I now need to go for more blood work to test for Vitamin D and B12. Could it be any other disorder that you know of? Any answers you may have would be very helpful.

    Thank you in advance.

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