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Next step getting tested for sjogrens

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  • #16
    Poppy, So pleased the ophth are more on the job. Maybe phone up the secretary or Patient Liaison sounding all innocent 'I had some blood tests on... and I haven't heard - what do I do to get the results?' A copy is v useful, otherwise admin just say 'blood tests are fine'. No, we want values, see if they're elevated/down etc. Oz sounds more like UK on random vaguery and overlooking things on test results. US has the 'work-up' culture. GP should have copy from hosp. If admin look confused I say confidently 'can I just have a screen-dump of that' (doh, OK). If you're not keen on phoning (me neither), maybe email. As long as you are super-pleasant and courteous, it's a normal reasonable query.
    Paediatric ocular rosacea ~ primum non nocere

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    • #17
      Hi Gabriel: I am new to this forum and so am a bit late with my response to your thread but fell compelled to comment. I DO suffer from Sjorgens confirmed with a biopsy. Yes the biopsy did leave me with a small numb spot on my lip but I would rather have that and know what I am dealing with than not have it and continue to wonder why I suffer so much with the dry eyes. Like you my mouth is dry at night but does not bother me much during the day so MaryVa61's advice is not entirely accurate. I have the 'good' kind of Sjogrens, if there is such a thing, in that I do not have any symptoms of joint problems and all of my tests with a rheumatologist were normal. One eye specialist that I saw when I told her that I was going to get tested for Sjogren's snapped "You don't have Sjogren's, don't even go there, don't even think about it!" Not sure how she would know that with not tests but looks like she was mistaken. Needless to say I have not been back. Like potatocakes said it is easy to develop symptoms of a disease and for that reason I don't even go on the Sjogrens website because I know the disease can be very devastating and I too am afraid that I will develop 'symptoms' of a mental nature. The dry eye forum is sufficient for me as that is my major problem. My advice is if you want a definitive diagnosis but still do not have one get the biopsy, it is a yea or a nay and you will have your answer.

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