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Probably Sjögren's Syndrome all along.....

Discussion in 'Connective Tissue Disorders/Ehlers-Danlos Syndrome' started by Megan17, Mar 29, 2016.

  1. Justin30

    Justin30 Senior Member

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    The ME that is described by Ramsays and Dowsett I believe referred to it as a:

    Neurological
    Autoimmune
    Immunological
    Mitochondrial
    Musuloskeletal
    Pain
    Endocrine
    Etc.

    Disease....the initial hit to the CNS disturbes all bodily systems.....

    Thats why I believe the list of comorbidities is extensive.....

    Sjorgens has huge overlapp with ME but due to the inability to diagnose quickly or the marker to show up...is a big problem....as like people I know with more severe form of SS have more permanent damage....because of the inability to diagnose and treat in a timely fashion....
     
    TrixieStix likes this.
  2. TrixieStix

    TrixieStix Senior Member

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    I am going thru this exact thing myself. I've seen 2 rheumatologists over the past 3 years, the last time being 6 months ago and both just dx me with Fibromyalgia, because none of the usual run of the mill autoimmune tests came back positive/elevated (only my rheumatoid factor was slightly elevated). This is ridiculous though given the severity of my symptoms and the profound level of disability I have as a result of them. Also like you said there are a % of people who are seronegative (up to 20% in Sjogren's) so why can't I be one of those people???

    Since January I've been under the care of one of the few ME/CFS specialists here in the US and this doctor ran a bunch of blood tests I have never had done before. The results have come back showing me to be deficient in Complement C3 and C4 (hypocomplementemia). The hypocomplementemia could be a red flag for me possibly having an immune complex/autoimmune disease.

    "Immune complex deposition is a prominent feature of several autoimmune diseases including vasculitis, systemic lupus erythematosus, cryoglobulinemia, rheumatoid arthritis, scleroderma, and sjogren's syndrome.
    ( https://en.wikipedia.org/wiki/Immune_complex )

    In addition my Natural Killer Cell Function is far below normal range, and impairments of Natural Killer Cell Function (cytotoxicity) is known to have an association with autoimmune diseases also.

    "Over the last 30 years, many studies have reported decreased NK cell numbers or impairment of NK cell cytotoxicity in the peripheral blood of patients with autoimmune diseases such as multiple sclerosis (MS), rheumatoid arthritis (RA), systemic lupus erythematosus (SLE), Sjögren's syndrome, and type I diabetes mellitus." ( https://arthritis-research.biomedcentral.com/articles/10.1186/ar4232 )

    Given all of this I thought it smart to message the rheumatologist I last saw about these test results, and she agreed that I should return to see her again. My appt is in 2 weeks. A few months ago I developed a new symptom of having a constantly parched feeling mouth which sometimes gets quite severe while sleeping (painful & tongue gets stuck to roof of my mouth) I will be sure to inquire about Sjogren's especially given the high % of people with seronegative SS, and the fact that the blood abnormalities I have can be seen in those with SS.

    I just happened across this post about Sjogren's, ME/CFS, diagnosis criteria, etc which I think has good insights. I learned that a salivary gland biopsy can cause permanent nerve damage! Knowing this I don't think I will consent/request one even though my SS-A and SS-B were negative.

    http://www.whatyousjo.com/2016/09/s...ity-and-the-cfsmefibromyalgia-dumping-ground/
     
  3. kangaSue

    kangaSue Senior Member

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    Brisbane, Australia
    @TrixieStix I see a lip biopsy is often suggested when blood tests are negative. It can take 10 years or more before the antibodies are detectable in bloods though, that is why there is often such a long lag in being diagnosed with SS.
    You can get this symptom with Sleep Apnea too, do you happen to have that? A dry mouth is also a symptom in Autoimmune Autonomic Ganglionopathy.
     
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  4. TrixieStix

    TrixieStix Senior Member

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    They put numbing drops in your eyes a few minutes before. It keeps your eyes from producing extra tears in reaction to the paper and it also makes it less uncomfortable. I just had my 1st ever schirmer's test done a couple days ago and it was indeed unpleasant but not horrible. It was worth it to find out that indeed my tear production is indeed decreased.

    The eye doctor has started me on Restasis (prescription immunsuppressant eye drops) and wants me to see the rheumatologist she refers people to as she also thinks I could possibly have Sjogren's. I was started on oral Pilocarpine 2 months ago for my dry mouth by an ENT and it has improved my eye pain. The last rheumatologist I saw referred me to an ENT to have a lip biopsy done, but I'm hesitant to go thru with it due to the risk of nerve damage.
     
    Last edited: Jun 12, 2017
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  5. TrixieStix

    TrixieStix Senior Member

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    @Jonathan Edwards Do you think the "Novel Sjo" test is worth seeking out for those of us who are negative for Ro and La antibodies, but who have symptoms suggestive of Sjogren's? My eye doctor was aware of the test but does not offer it.
     
  6. TrixieStix

    TrixieStix Senior Member

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    I've just found this from 2015 that discusses Sjogren's being misdiagnosed as Sjogren's Syndrome (SS).

    "Comparing patients with dryness with or without SS in our study, we noticed a high prevalence of FM (fibromyalgia) in both pSS (63%) and non-SS (43.8%) groups. Moreover, 36.7% of patients with fibromyalgia referred for LSGB (lip biopsy) because dryness symptoms displayed LSGB with focus score of ≥ 1 and they met the AECG criteria for SS. These data suggest that fibromyalgia is a trick, as differentiating it from diffuse muscle skeletal pain and fatigue of SS is not possible, thus underestimating FM diagnosis in SS. On the other hand, dryness and fatigue are common symptoms in FM patients. Our data suggest that SS should be investigated in patients with FM and dryness"

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4332430/
     
    jodie100 likes this.

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