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Poll - Have you been tested for Sjogren's Syndrome?

Discussion in 'Immune: Autoimmune and Mast Cell Disorders' started by TigerLilea, Mar 17, 2019.


Has your doctor tested you for Sjogren's Syndrome?

  1. Yes - I tested positive and I have dry eyes and dry mouth

    1 vote(s)
  2. Yes - I tested positive but I don't have dry eyes and dry mouth

    3 vote(s)
  3. Yes - I tested negative

    8 vote(s)
  4. No - I have never been tested

    26 vote(s)
  5. I don't know if my doctor has tested me

    5 vote(s)
  1. TigerLilea

    TigerLilea Senior Member (Voting Rights)

    Metro Vancouver, BC - Canada
    I'm curious to know how many other people with ME/CFS have tested positive for Sjogren's syndrome. I was recently tested and came up positive for SS-A, however, I don't have the classic symptoms (dry eyes and dry mouth). I haven't seen the Rheumatologist yet, but according to my Internist approximately 25% of people will test positive for the antibodies without actually having Sjogren's.
    adambeyoncelowe, Samuel, Ravn and 8 others like this.
  2. Wonko

    Wonko Senior Member (Voting Rights)

    I haven't been tested by my GP/NHS but I did have a full thyroid screen last year (private) which included 2 thyroid antibody tests. Both were, according to memory, mid range normal.

    I do have dry eyes and frequent, but not continuous, dry mouth.

    I assume this is completely unrelated to Sjogrens.
    pteropus, Ravn, DokaGirl and 3 others like this.
  3. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

    I haven't been tested but think I would be a good candidate for testing.
  4. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

    My understanding is less than 50% of Sjogrens patients will actually test positive for SS-A or SS-B. It can take 10+ years for these to appear. Early Sjogrens antibody tests are available in the US and seem to pick up more positive tests. This article about the early antibodies is interesting as it highlights that Sjogrens is so much more than dry eyes and mouth. It is an autonomic disease causing dysautonomia and neuropathy among many things.
    This is a very interesting paper [Taken from PR https://forums.phoenixrising.me/threads/kynurenine-pathway-and-sjogrens-syndrome.75239/#post-2182697]. Ties in many symptoms & markers a subset of ME patients are starting to report, but in Sjogrens. Very interesting how it describes the progression of CNS dysfunction in a disease many think is just dry eyes and month. Even mentions antibodies to Muscarinic receptors that recent ME research is also highlighting (Cell Trend test).
    Neurological and Inflammatory Manifestations in Sjögren’s Syndrome: The Role of the Kynurenine Metabolic Pathway
    diwa, Lisa108, oldtimer and 7 others like this.
  5. oldtimer

    oldtimer Senior Member (Voting Rights)

    Melbourne Australia
    I ticked the third box but I still don't know whether I have SS or not and have decided that in my case it's not important to know.

    Recently I was referred to a rheumatologist who did all the usual tests. They were negative which, as already mentioned, doesn't mean you don't have SS.

    My eyes are a big problem. Fairly bad neuropathy and other things that may or may not be attributable to SS didn't seem to be important in the initial considerations.

    The rheumatologist referred me on to a specialist in lip biopsies who seemed to think my mouth wasn't really bad enough to provide a definite answer without positive blood results. She managed to squeeze some saliva from a large gland on one side of my mouth and not so much on the other, which fascinated me for some reason.

    At this point I had already spent several hundred dollars and didn't want to add another $300 for the biopsy so I settled on not knowing any more and just treating my eyes.

    Next stop, two days ago, was the ophthalmologist who added another two punctal plugs in the upper tear ducts. With all 4 tear ducts blocked and no outlet for tears my eyes are still dry and don't overflow but the stinging is greatly reduced and I only need lubricating drops 3 or 4 times a day instead of at least hourly. I'm happy!
  6. Ravn

    Ravn Senior Member (Voting Rights)

    Aotearoa New Zealand
    Answered "tested but negative".
    More precisely I've had the autoantibody blood test but no biopsy. So you could say I've been partly tested.
    My dry eyes are mild and my dry mouth is intermittent. The doctor took my word for it on the eyes and did a sort of timed spit production test for the mouth which was borderline.
  7. Samuel

    Samuel Senior Member (Voting Rights)

    might want to specify the tests? they might change or vary.

    sjogren's antibodies ss-a(ro) and ss-b(la) both negative.

    i don't know what distinguishes ss clinically from being part of my highly multisystem, highly multisymptom meicc++++++++ presentation.

    same question with mcas, eds, sle, etc.
  8. Hip

    Hip Senior Member (Voting Rights)

    Sjogren's has been linked to chronic enterovirus infection of the salivary glands. This might explain why the prevalence of Sjogren's is higher among ME/CFS patients (most ME/CFS patients have chronic enterovirus infections).

    Interestingly, my mother developed Sjogren's at about the same time I developed ME/CFS, which was just after a coxsackievirus B4 virus infection spread through my friends and family.
    TigerLilea and andypants like this.
  9. Wonko

    Wonko Senior Member (Voting Rights)

    How do people get a diagnosis that specific for a virus?

    All I've ever got, or my family when I was living there, is "well its a virus innit, take this prescription for a painkiller that will do precisely nothing to help and come back in 2 weeks if you've still got it"
  10. Hip

    Hip Senior Member (Voting Rights)

    It's not easy to detect a virus, unless you get a blood sample taken during the acute infection (first week or so) when there are still high levels in the blood, and you use either PCR testing or antibody testing.

    After that period, it's often very difficult to figure out what virus hit you, because you will usually no longer have the virus in the blood (so blood PCR will be negative), and although you will have mildly elevated IgG antibodies for life for that virus, you will also have mildly elevated IgG antibodies to dozens of other viruses that you caught earlier in life. So you cannot know which of those viruses with mildly elevated IgG antibodies was the culprit.

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