1. Community
  2. Bones, joints and muscles
  3. Sjogren's Syndrome

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

Prev Next
  • jj34180
    jj34180 susan0217

    Posted

    Yes, I share your pain. Most of my family think I should suck it up. I have been trying to get a dx since 01/2015. Since, that time, I had my thyroid removed, have seen 4 GI doctors and 2 Rheumatologists. I have had a positive ANA but my Sjogrens bloodwork has come back negative. My next step is a lip biopsy. In two weeks I will discuss a lip biopsy with an ENT.
    • brenwag68
      brenwag68 jj34180

      Posted

      Hi jj 

      sorry for your troubles... just wanted to say that a lip bio does not always come back with results (mine did not) I have extreme scar tissue in my mouth due to lack of fluid & they amount of skin they could harvest that was not damaged was so minimal that it could not give an exact reading... I have been told that a lot of doctors do not even use the test anymore due to its unreliability, I have heard good things about the schrimer test... a negative test in blood does not mean you do not have Sjogrens (my test at times shows as negative) I get my Bloodwork done often because of this. Your doctor may need to check yours frequently... best to you!!!

    • Tumtum1963
      Tumtum1963 brenwag68

      Posted

      The Schirmers is an awful abs outmoded test according to me and my optician and ophthamologist. It involves sticking tiny strips of blotting paper under eyelids - which would make anyone’s eyes water if they had a single drop gpi g spare! Unlike lip biopsy it’s not difinitive. Yes the lip biopsy only works if you have enough tiny and intact salivary glands available but our lips are usually full of them. Your experience is very unlucky. Mine were brown and pretty far gone but full of lymphocyte clusters. If this test is dying out it just means that many more like me with negative SSA and B won’t ever be properly diagnosed. It is a bit invasive but from a diagnostic point of view a positive result is definitive of Sjögren’s at least. 

    • brenwag68
      brenwag68 Tumtum1963

      Posted

      According to my doctor (which is probably why I am getting a new one) does not like the lip bio (my first doc gave me the lip bio) & she kept taking pieces all over my mouth, finally took a couple in the corner because that is where the pieces were “healthier” but they could not get any type (neg or pos) from them because they were too damaged... the doctor said in cases like that (which are rare) they prefer the Schirmer test...

    • brenwag68
      brenwag68

      Posted

      I know there are some who do not like certain tests. They are entitled to there opinions, however if after going through tests (ie Bloodwork, lip bio, etc) & they come back negative, then other tests should be run (ie schrimer Test) it is important that you find what is wrong & which autoimmune disease (if any) you have no matter how uncomfortable the test may be (I have had such horrible tests run on me, I wouldn’t wish them on my worst enemy) but if it were not for the schrimer test, my doc never would have found my problem. Just saying... bottom line do what the doc tells you & always question everything. 

    • Tumtum1963
      Tumtum1963 brenwag68

      Posted

      I’m completely with you on the need for clarity. I too have had many horrible investigations including a lumbar puncture which took 8 attempts. But I’d have then again for the clarity they gave me. 

      The thing about Schirmers is it’s non specific as well as unpleasant. Mine was normal and yet I have very dry eyes as confirmed by many opticians and the eye doctor - hence punctal plugs. There are much newer tests for dry eyes that push Schirmers into the dark ages. Also - many conditions and medications that can cause dryness other than Sjögren’s. But in your case I can see that you needed clarity from other tests and I’m glad you got it. 

    • brenwag68
      brenwag68 Tumtum1963

      Posted

      Yes, I feel that whatever test works for you & the doc suggests it, go for it!

      the schrimer test worked for me & the lip bio did not... I just want people to know that not all tests come back positive & that they may need other tests done to get to the bottom of their disease... do not get discouraged if the first test comes back negative, there are many others that the doc can perform.., best to you!

  • brenwag68
    brenwag68 susan0217

    Posted

    Hi Susan,

    so sorry for your troubles... I have a unique case as well, at times it shows that I have Sjogrens while others not (but definitely some sort of autoimmune disease (s)) my doctor decided to do Bloodwork on me every 6 months to see changes & rule out Lupus (I have all symptoms of lupus) if you have severe dryness your doctor should at least put you on meds for that until they decide whether you have Sjogrens or not... keep holding in there, it’s a long journey but it doesn’t have to be alone (you have a lot of caring people on here willing to help) ps don’t listen to hubby, it’s not something “just to suck up” & “lazy” has nothing to do with it!!! It’s a horrible disease with debilitating results. Due to Sjogren’s & it’s horrible counterparts (raynauds & neuropathy) I am in excruciating pain almost everyday of my life, can hardly walk, no fluid, heart problems, kidney problems & the list goes on... best to you!!!

    • diane03050
      diane03050 brenwag68

      Posted

      You are right I was also tested for Lupus Neg I have dry nose ,mouth, ears, and eyes etc. This has been since December so annoying. I had to sneeze this morning I actually hurt myself making  sneeze
    • brenwag68
      brenwag68 diane03050

      Posted

      Hi Diane,

      i have severe dry eyes (affecting my seeing), dry nose (always sore), dry mouth (it has now affected my teeth so badly that I am considering having the bottom removed & put in implants) & dry ears (they pain & cannot stand air or air conditioners) I also cannot stand the sun (I get rashes, sickness) the doc gave me meds for increasing saliva but they do not help much... I am so sorry you have to go through this, it is so annoying & painful... best to you😌

  • sirenetta
    sirenetta susan0217

    Posted

    I have been having various symptoms for over a year now and I have been unwell. It was not until my blood test showed RA factor positive and raised CRP that I started suspecting an autoimmune illness, at first RA. I have also had dry mouth, nose and eyes so I thought it might be Sjogren but ENA so far negative. I have had an ultrasound which showed possible autoimmune activity regarding thyroid and submandibular glands but at the time no thyroid antibodies. I have recently retested and found positive ANA and a low level of thyroid antibodies, my RA factor has been positive at all tests. There are other tests which also show autoimmunity at work. It is clear to me that things are going on and that this autoimmune condition is trying to decide where to go.  Would I like a diagnosis? Yes of course, but I think it might take a while and in the meantime I am going to get damaged. Also I am not very keen on the medications they offer, nor their side effects. So I have opted to not wait and start dealing with it right now. I am currently on the Coimbra protocol (I officially started yesterday) and I am hoping to nip this in the bud, before it actually explodes into full blown disease. I hope one day my body/immune system will forget the bad habits and that I might even be able to come off the Coimbra protocol. I wish you all the best.
  • christine00342
    christine00342 susan0217

    Posted

    Hi Susan, No they won’t give you anything until you get a positive diagnosis!!! 

    I had a lip biopsy last Tuesday & have to wait 2 to 4 weeks for results !!!!!

    my bloods came back negative also. I would advise anyone suffering from Sjögren’s if they can afford it, to have a private biopsy, (£350) Ive been waiting for 6 months now, nearing the time when I can get some medication for this horrible illness. 

    Mine is Secondary Sjögren’s as I also have under active thyroid. My Chronic tiredness is the worst symptom, but dry eyes dry mouth, dry everything!! Etc etc, it goes on & on, 

    hope you can get things sorted. I also think your husband is being very unfair towards you, mine is wonderful. Xxx

    • Tumtum1963
      Tumtum1963 christine00342

      Posted

      Hi Christine. I just wanted to to say that secondary Sjögren’s is only secondary to another rheumatic disease such as Lupus or RA - so my rheumatologist explained. I’m hypothyroid and have Sjögren’s too. I did have diagnosis of RA seven years ago but they now think that this was Sjögren’s mimicking RA and that it is actually my first rheumatic disease ie primary. Hypothyroidism is usually autoimmune but not a systemic disease - just endocrine. 

    • Tumtum1963
      Tumtum1963

      Posted

      Ps and it is often the Sjögren’s that attacks the thyroid so the Hypothyroidism is often secondary to Sjögren’s - which could have been around for much longer than we were aware. 

    • brenwag68
      brenwag68 christine00342

      Posted

      Hi Christine:

      My Sjogrens is secondary as well, the doc sees other autoimmune disease(s) there but it will not show which, he believes Lupus (because I have all the symptoms of) & he checks me often for it... autoimmune disease is very complicated, usually not just bloodwork but sometimes several different tests are needed to pinpoint what you have, it’s a daunting trip but keep on traveling & you’ll get there!!! Best to you 😉

    • christine00342
      christine00342 Tumtum1963

      Posted

      Sorry but my rheumatologist said it would be secondary because thyroid is a auto immune disease x
    • Tumtum1963
      Tumtum1963 christine00342

      Posted

      From e-medicine, Medscape - 11 Feb 2018 · “Primary Sjögren syndrome occurs in the absence of another underlying rheumatic disorder, whereas secondary Sjögren syndrome is associated with another underlying rheumatic disease, such as systemic lupus erythematosus (SLE), rheumatoid arthritis (RA), or scleroderma.”

    • brenwag68
      brenwag68 Tumtum1963

      Posted

      Tumtum,

      my doctor to,d me the same thing... he said I have secondary Sjogrens do to one of those diseases (which he believes to be Lupus (although not yet reared its ugly head)...

    • Tumtum1963
      Tumtum1963 brenwag68

      Posted

      Yes mine is same ie has ??? hanging over primary or secondary because my blood markers also point to Scleroderma or Myositis but not yet shown themselves thankfully. But then I read on the Sjögren’s World forum that this primary/ secondary thing has been discredited now and it really makes no difference. Primary just means the rheumatic disease that came first. 

    • brenwag68
      brenwag68 Tumtum1963

      Posted

      The problem with most (if not all) autoimmune diseases is that there are so many doctors / specialists & they all have different ideas on how exactly the disease comes about, what is the best meds / treatments for each disease... my doctor believes that my autoimmune diseases came from stress to the body (I had some trauma as well as several surgeries (right on top of each other)) while another doctor told me they are probably heriditary (cannot prove that because I do not know too many family members) so all I know is that I have the diseases, I’m sick all the time & it’s only getting worse... you take care!!! 🙂

Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.