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Another Possible Sjogren Syndrome Candidate?

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catherinespark
catherinespark

So here's the back story:

September 2022: winter vomiting bug

October 2022: covid

December 2022: glandular fever type illness - flare up with white spots on tonsils, temperature, swollen glands, muscle pain, malaise etc. Prescribed clarithromycin precautionarily as we thought it was strep throat

January 2023: return of the muscle pain and white spots on tonsils following a ski trip. Second dose of clarithromycin. Throat cultures showed nothing. Tested for glandular fever.

February 2023: Epstein Barr positive for both initial and long-term immunoglobulins; cytomegalovirus initial immunoglobulin teat inconclusive; white blood cell count raised. Diagnosis of CMV mono made.

April 2023: CMV mono test redone and diagnosis revoked as immunoglobulins did not develop as would have been expected in CMV mono. Testing closed and no conclusive diagnosis made

August 2023: Tested negative for coeliac disease

Over the course of 12 months I dealt with 15 different intermittent petty flare ups, including more swollen-feeling glands and white spots on tonsils, as well as tongue fuzz, oral thrush, repeated vaginal thrush, eczema, ongoing sticky sinus congestion (at one point turning into an infection requiring antibiotics), weeks-long productive coughs and wheezing, and intermittent muscle pain, joint stiffness, and fatigue (these last three usually along with the tongue and throat symptoms when they appear).

Often, especially in weeks following a cold or similar, I will go to sleep with my hands cupped over my mouth because it helps retain moisture from my breath during mouth breathing due to blocked sinuses. Otherwise I have to sip water every few seconds, literally, all night.

Beconase steroid nasal spray relieves the blocked sinuses. Difflam spray and chloralieve lozenges along with a dose of paracetamol help when the throat and muscle/joint flare ups (now usually around, but not confined to the time just before, my period; severe enough to wear me out all day, but not severe enough to keep me off work - can also be triggered by stress, overexercise, under-fuelling, and sleep deprivation). I've found rosehip extract and algal omega 3 oil softgels helpful in damping down flare ups in their early stages.

I also have IBS (tends to flare seasonally around late autumn and resolve itself with help by mid winter to early spring), as well as vaginal dryness, and frequent excessive impacted ear wax, sometimes with itchy ears too - have done in all instances since I was a teenager. And I have borderline PCOS, but with normal testosterone and blood glucose levels, and mildly raised androstenedione.

It only recently hit me that I seem to be getting issues mainly surrounding all my various mucus membranes - nasal and mouth dryness, tonsils, oral and vaginal health. And when I looked up Sjogren's, it seems to cluster those things together very naturally, causally, and also explains dispirate symptoms and inconclusive immunological test findings.

But my symptoms are comparatively mild and are not unique hallmarks of any one specific disease by any stretch, so I don't know - what do experienced Sjogren's patients think about it all on first reading? Does it sound like I may have early/mild symptoms of it, or does it sound like it's more likely something else?

Thanks in advance!

0 likes, 2 replies

2 Replies

  • debbie86279
    debbie86279 catherinespark

    Edited

    Hi.i am just going through diagnosis for this

    probably had it 13 yrs

    starts off quite vague so never picked up ie muscle aches and pains, fatigue

    blood tests can be normal hence why challengng but ask for

    esr inflammation markers

    crp

    auto antibodies assoc with sjogrens yr gp shd know

    schirmers eye dryness via opthalmology

    slit eye test

    eye stain test

    spit tests if mouth dry

    salivary gland ultrasound

    but I don't have the antibodies but do have rheu factor another blood test to ask for

    then it's dry eyes nose mouth vagina but again can have one or more of those

    I now have dysautonomia and nerve pain arms and legs trunk face

    this is a more severe part of sjogrens for some

    awaiting a lip biopsy to look for specific inflammatory markers but this is only 70.per cent accurate as well

    its a tricky one to diagnose if you are atypical like me but I am on a dmard from rheumatology and they are reducing it and when they have all my symptoms have escalated further hence for me likely sjogrens which is the second highest cause of neuropathy after diabetes needs both Neurologist in my case as well as rheumatology. it is seen as a neurological condition by some and others a musculoskeletal issues mine straddles both disciplines

    In 2010 i had thyroiditis and hypothyroidism also asso with sjogrens

    my joint pain is fingers Thumbs wrists ankles knees also typical with sjogrens

    I now have odd rashes and vascular things like petachaie, purpura, bruises that come and go also associated

    this is why is takes. many many years to be diagnosed as we are all slightly different

    Gps only often know the main common symptoms not the more severe ones

    cant cope with temp differences ie cold and sweat too much and bp issues and heart rate elevations

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