Hello everyone,

I have primary Hughes Syndrome and I know that this usually comes in 3's with Underactive Thyroid and Sjogrens.

Over the past few months I have swelling of my salivary glands and although that has stopped my mouth is producing very little saliva and I'm struggling to swallow.

I have had an MRI scan to check for a blockage in the gland which I'm pretty sure will come back clear.

I am seeing the oral surgeon today and I want to mention the possibility of Sjogrens, as I think I'll just get the repsonce 'no it's not blocked, we're discharging you.' Does anyone have any advise on what to say that will help with getting it investigated? I'm going to the appointment alone and sometimes struggle to get my point across/get the solution I want when it comes to doctors.

Thanks in advance!

4 Replies

  • Hi Zoebarber,

    Making a list before your appointment of what you want to say/suggest/ask is a useful tip. You can also keep a symptom diary. You can even show this to your consultant to make sure everything is covered.

    When it comes to sjogrens there is no harm in asking, and they might be able to run the tests, or alternatively they might say its not their area. In some areas you are best to speak to a rheumatologist or optomologist. Not sure who you are under for Hughes (afraid I don't know much about it) but if not a rheumy, then it might be best to get a referral to one.

    The symptoms tend to overlap with other conditions, but bloods (for underlying cause), lip biopsy or saliva flow tests (for mouth), or schirmer tests (for dry eyes) can give a pretty easy diagnosis. I already had lupus, so my rheumy was able to diagnose sjogrens fairly easily.

    All the best xx

  • Thanks for your reply!

    I'll make a list because i always end up leaving and realising I've left something out!

    I see a hematologist for the Hughes syndrome as it's an autoimmune blood disorder so may ask for a referral to a rheumy if the oral dept cant help.

    Fingers crossed I get an answer!

  • Yeah, good luck! I'm sure you'll be fine but doing your own research etc does no harm.

    In the meantime, it might be worth asking about some saliva replacement spray, or buying some lozenges/dry mouth gel. They don't fix anything underlying but might help you to manage daily.

    I am currently using the spray and don't find it too helpful, so am researching the lozenges/gels.

    Previously my eyes were the major issue, but I'm currently on a trial of different drops and have found one that was extremely good so will be using that after the trial is over.

    All the best xx

  • Just an update, as suspected my oral surgeon discharged me with very little sympathy.

    Since then I've been to my GP who's prescribed me an artificial saliva spray and he said he'll investigate Sjogrens if the problem persists, so at least I've got a small solution!

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