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What do you think???

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dawnc1976
dawnc1976

Hi everyone,

I want to know what everyone's opinion is on my possible diagnosis of Sjogren's. I have asked my primary doctor to refer me to a rheumatologist and she hasn't. I guess she doesn't think I have it. These are my symptoms, which seem to be worsening over the last few years.

  • very dry eyes, I'm on restasis
  • eyes are very photosensitive
  • dry mouth
  • dry nostrils, always a little bit of blood in my nose, I have a lot of sinus problems.
  • pain in my jaws and near my ear
  • frequent headaches
  • very sensitive gag reflex, which seems to be more frequent now. I feel like I'm going to gag constantly today.
  • itchy throat, sometimes I start coughing for no reason. It's hard to raise my voice at my kids without coughing.

I even had a positive anti-ssa test, but she keeps blowing me off. I'm not sure if it's because I seem fine outwardly and I'm not a complainer. Kidney stones and conjunctivitis are common complications and I've had multiple in the past few years.

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1 Reply

  • pam42074
    pam42074 dawnc1976

    Edited

    Hi Dawnc1976,

    Sorry to hear of your illness and dryness symptoms. It sounds to me like there is a high chance that you have Sjogrens syndrome (SS) and personally I am sure you should be referred to a Rheumatologist.

    I suggest you get a second opinion from another GP at your GP practice and try to be calm but assertive that you are positive that a referral is appropriate because your symptoms tick many of the criteria for the diagnosis of Sjogrens, particularly when taken together with your having Sjogens Syndrome (SSa) positive auto-antibodies, which on their own would justify a referral in any case. It could be considered negligent for your GP to ignore your sicca symptoms (dryness) and blood test results, which confirm you have an auto-immune status....what is the Dr waiting for before they will refer you???

    The further tests that you may need in order to actually diagnose you with Sjogrens would not be undertaken by a GP but by a specialist such a a Rheumatologist or Oral Medicine physician.

    Take a look at the following criteria for a diagnosis:

    https://www.hopkinssjogrens.org/disease-information/diagnosis-sjogrens-syndrome/americaneuropean-consensus-criteria-sjgrens-syndrome/

    Perhaps print it out and take it with you?

    Another option, which my GP took, was to write to Rheumatology with my blood results and symptoms and ask their opinion. This could be something your GP MAY be more willing to do? In my case Rheumatology wrote back to refer me to them largely on the SSa antibody result and dry eyes ...it was another couple of years of becoming drier before Rheumatology diagnosed me with SS.

    Other options may include asking your dentist for a referral to your local dental hospital/oral medicine department (for the SS symptom of oral dryness) or, if the second GP will also not refer you to Rheumatology, .... ask reception how to put in a complaint to the Practice Manager ... always keep your manner calm but assertive. Even getting your optician to write to your GP may help add pressure to refer? If you can afford it (or if you have Health Insurance/benefits cover) I suppose a private consultation could be arranged as a last resort or change GP practice?

    For your information:

    I was diagnosed with Sjogrens Syndrome in Oct 2016 by Rheumatology. I had dry eyes for several years before this.

    My symptoms include/have included:

    1. Very dry eyes (for which Rheumatology referred me to Opthalmology)
    2. Eyes moderately photosensitive
    3. Dry nasal passages
    4. Pain in jaw near ear (never directly linked with Sjogrens by medics)
    5. headaches (possibly stress/anxiety/menopause related)
    6. strong gag reflex
    7. slight dry cough occasionally (some SS sufferers get a cough due to dry respiratory passages)

    Not sure when I will check back on here but I hope this info helps you and you get a referral.

    Best Wishes,

    Pam

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