Don't know what to think

I am 24. I was diagnosed 5-6 years ago with lupus and sjogrens syndrome. I was unhappy with the care I was receiving locally so asked for a referral to Leeds.

Leeds are confused about my diagnosis as there is nothing much in my bloods and as a result are not sure how to treat me.

They have refereed me to an immunologist and want me to have a biopsy as they are now questioning primary sjogrens (my bloods are negative).

My worst symptoms are fatigue, headaches, temperatures, dry eyes and mouth, swollen lymph nodes and sore throats(the swollen glands and sore throats occur weekly).

I am at a complete loss as to what to do. All I want is a diagnosis and treatment.

I am feeling so upset and frustrated right now as I have been battling for treatment and support for so long and am so worried that everything will come back negative and I will be left with no support at all.

I am also very anxious about having the biopsy done.

Any thoughts would be appreciated :)

7 Replies

  • Hi Jessie, were you not on any meds when you got your diagnosis? I have been diagnosed with both and it can be confusing when not feeling well as to which is causing the pain. Sjogrens is supposed to be secondary to my lupus but feel it's this that gives me the most problems. It's frustrating for you, but hopefully after further testing they will be more aware of what is causing your difficulties. I didn't think sjogrens showed up in bloods? I had to have a special paper in my eyes and mouth to see how much fluid/saliva there was.

    Did they tell you what biopsy they were going to do and where from? At least they are prepared to investigate further, this is a good thing as they will get to the bottom of it and then can begin correct treatment. It is a worrying time for you, hang in there and hopefully it will be resolved soon.

    Best wishes 🌷

  • Hi Chris. Thanks for your reply. I take hydroxychloroquine. Yes my sjogrens seems to give me the most problems so I suppose that would fit with what they are saying. I have had the paper in my eyes too. As far as I'm aware there are bloods for primary sjogrens but there are some cases that do not show in the bloods.

    They just said it will be a biopsy where they either take a bit from my lip or neck.

    Thank you for your kind words :)

  • Hi Jessie_2014,

    I'm sorry to hear that you are experiencing difficulty and uncertainty over your diagnosis. Are you being seen at the Chapel Allerton in Leeds?

  • Hi Paul. Thank you for your message. Yes I am under their care currently although am being referred elsewhere in Leeds for the biopsy and to see an immunologist.

  • I hope that they result in some answers for you. Please keep us updated.

  • For those who wished to be kept updated. I attended the sjogrens clinic on Friday where I had a scan of my lips and an ultrasound scan of my neck/glands done. I did not receive the lip scan results but was told that the ultrasound scan was indicative of sjogrens. I have to go back in January for the feedback and to see what they will do next. Trying to forget and remain positive over the festive period but it is hard feeling so rubbish with so much uncertainty :(

  • I was also told that I am very young to have sjogrens.

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