Hospital appointment next tues

Hello, I am a 50 yr old female from the uk. Have had problems with salivary glands for 5 years. Had various tests, biopsy, ultrasound, MRI, and been told it's chronic inflammation until the most recent ultrasound 2 months ago which was done by an ent doctor who said right submandibular gland withered away to non functioning and left one halfway there. She thinks it is sjogrens from appearance on scan and I'm seeing a rheumatologist next week (even though I don't have joint problems other than wear and tear arthritis in my feet). I do also have dry eyes especially in the morning they feel dry and gritty though this does improve a bit as the day goes on. I would be really grateful if anyone point me in the direction of what questions I need to ask when I'm there and what info they will want to know. Thanks!

3 Replies

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  • Hi there, suggest you ask the specialists about the possible progression from Sicca syndrome which is the dry mouth and eyes issue to Sjogrens, and find out about other symptoms to watch out for. Whilst blood tests for rheumatic factor can be negative, autoimmune conditions such as Sjogrens can affect various areas of the body and cause a range of symptoms, so best to become as informed as you can and just keep an eye on things.

    Whether your condition is diagnosed as Sjogrens or not, living the best quality of life you can, keeping as healthy as possible with daily exercise and lots of rest, and managing the symptoms seems to be the main focus of treatment. From what I have read the autoimmune medications can have undesired side effects so you should weigh up these along with the benefits there.

    I also have intermittent inflammation and jaw pain with non functioning major salivary glands, terrible dry mouth and minor dry eyes in the morning. I have definitely found a correlation for when I eat not so good food, miss my exercise and rest, or put my body under stress with the dry mouth/throat increasing and bouts of fatigue. Getting some support for a lifestyle change was invaluable! I hope the hospital visit goes well and you get some answers.

  • Hello Diane and thank you for your reply, that was very helpful. I went to the appointment, verdict still inconclusive, the Dr agreed the salivary gland scans looked like sjogrens but I had the schirmer test and though tear production was slow I did produce the required amount in the allotted time so that was a no. They took quite a lot of blood so waiting on results of those tests and depending on results they might decide to do a lip biopsy. The Dr didn't think a diagnosis important as treatment is symptomatic anyway, but it is important to me. I'm not good at saying no to doing things that are tiring and stressful, both at work and personal life and I think a diagnosis would help me be better at standing up for my needs! Thank you again. :)

  • Got blood tests results back, not sjogrens but an immune deficiency which accounts for the repeated salivary gland infections and subsequent damage. So I have my answer and just have to make sure I don't ignore infection but always go get antibiotics. Thank you.

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