in october 2004 i noticed a swelling in my left submandi...

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in october 2004 i noticed a swelling in my left submandibular gland and mentioned it to my gp who did routine blood tests to rule out lymphoma, these were negative. by then my parotid gland was enlarged as well and i was suffering from earache + a sense of fullness, headache, and pain below my ear. i was referred to an ent specialist in april 2005 and he arranged routine blood tests positive that i was suffering from sjorgens syndrome,these being negative, he took me to theatre and biopsied salivary glands on my lip which showed chronic inflammation of the parotid gland. then he arranged a mri scan of my parotid gland which showed bulky gland with diffuse tissue this was followed by fine needle biopsy which he assured me showed nothing quote "nasty", and said he would keep an eye on me. i was then given a 6 month appointment for june 2006, which has been changed by them to september 2006 and eventually october 2006. in the meantime i moved and changed dentists and he was concerned about my salivary gland swellings and referred me to the dental hospital oral medicine department. i saw a registrar in april 2006 had x rays to rule out stones and routine blood tests,my parotid gland was milked to check for infection in the ducts. none of these tests were conclusive. then they arranged for me to have an ultrasound scan of my glands and i was told by the consultant radiologist that i had no stones, my parotid gland was very bulky and that probably my salivary disorders are due to some systemic disease and he would recommend a ct scan or mri scan. i was given an appointment for june 2006 to see the consultant in oral medicine at the dental hospital. today i have a large facial swelling which does not reduce at all, a swelling under my jaw, pain, headache. i also have the added knowledge that i have had two serious medical conditions which were missed, by the medical profession,despite various investigations, and both time the symptoms were put down to stress. i went on to suffer from a brain haemorrhage and infarct due to a large pituitary tumour and also a ruptured fallopian tube due to an abscess and subsequently developed peritonitis, luckily for me not at the same time. i have no faith in the medical profession, and i am a qualified rgn.

[i:8e5645716c]This message was automatically imported from the original Patient Experience[/i:8e5645716c]

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  • Posted

    I am having the same trouble getting a diagnoses , i have all the syptoms but my bloods come back negative .I have found a lot of other people find this it is a difficult thing to get a positive on, I have seronegitive arthritis and raynards . I have had all the symptoms for 3 years. I lost my voice and they cant sort out why and they even think i have sjorgrens but finding it is not happening . If doctors read all the posts people write on all the sites about sjorgrens they would find it helpful compairing syptoms. :idea:
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  • Posted

    Alicia

    My GP is wondering if I have Sjogren's and has referred me to an ENT consultant (appointment next week).

    I have been taking steroids for 4 years for Polymyalgia Rheumatica and Temporal Arteritis (commenced on 40mgs/day now on 1mg/day).

    Apparently if you have one auto immune disease it can predispose you to another!

    The present problem started with a severe throat infection just before Christmas and my salivary glands became extremely swollen (never had swollen glands before). Although they have gone down to such an extent where I can't see them now, I can still feel them (I think the GP said they were 2 or 3 cms. My main symptoms are a frequent dry mouth and a slightly swollen gland under the tongue. Sometimes my voice becomes a little husky if I talk too much!

    Would be interested to hear how you get on.

    MrsO

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  • Posted

    Did they ever figure out what was causing the problem with your salivary glands? Mine started with my left submandibular and then a few months later my right parotid is swollen and painful. Getting tests, but no answers.
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  • Posted

    Hello nieata

    Once teeth, Lymphoma and Sjogren's were ruled out with various X-rays, blood tests, CT and MRI scans, Mickulitz's syndrome was suspected by my rheumatologist. It is closely related to Sjogren's but unlike Sjogren's can disappear permanently.....eventually. Sure enough, some 5-6 months later all went back to normal. It obviously all emanated from the severe throat infection I had suffered and because I was on steroids for Polymyalgia I was at risk of contracting another auto immune condition. Luckily it turned out to be one from which I completely recovered. I do hope you get some answers soon.

    MrsO

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