Hi All

I think that i have Sjögren's Syndrome. I live in Perth City. I dont know where to go to for check up or what to do?

Hi All

I was reading lot of stuffs over internet about Sjögren's Syndrome and feel that I am also having Sjögren's Syndrome. My mouth is so dry (drinking lots of water (may be 6-7 liters)), my lips are dry (applying lots of lip balms) and diagnosed with arthritis as well. I am just 30 years old, dont know how I got it. I want to do check up and see if i have Sjögren's Syndrome or not (seems like I have it). I live in Perth City. I dont know where to go to for check up or what to do? Do i just go to normal GP for check up? Can someone direct me where to go for check up?

8 Replies

  • Hi,

    Yes, definitely go to your GP and tell him/her your suspicions, they will have preliminary blood tests done and depending on the outcome of those will make a decision on whether to refer you to a specialist. Sjogren's in my experience does cause very dry mouth but that does not necessarily equate to thirst as such. You have said you are drinking 6-7 litres of water per day - that is a lot and needs to be checked out anyway just in case you have something else going on there.

    Good Luck.

  • I'm from Perth...see your GP he should send you to an immunologist for further investigation ( I saw Peter Hollingsworth at Sir Charles gairdner hospital) I have only been once but continuing investigation. Good luck

  • I am in W. A. Country, my G P after many tests sent me to a Rheumatologist who diagnosed Secondary Sjogren's Syndrome (with Raynaud's) Dry mouth , eyes, lips, tongue. These auto immune problems are difficult to diagnose. Hope you find help soon.

  • That's a massive amount of water! The advice I was given was - 'too much water washes your good saliva away, chew sugar-free gum as often as you can because you need to stimulate your saliva glands.' I followed the advice and it works really well for me. Unfortunately I can't work the same magic on my eyes :-(

    You should def go to your GP.

  • Hi, I have found that I have Sjogrens with the main symptom being dry mouth. Similar to you I feel as though I drink huge amounts of water and need to use lip balm all the time and this has been increasing for years. It is a hard disease to definitively diagnose as can be related to other conditions. The first GPs I saw dismissed my symptoms or diagnosed other things. I then travelled to see my long term family GP who straight off said she thought I had Sjogrens. She referred me to a maxillofacial surgeon who tried to milk my saliva glands and assessed that the large parotid ones were not working at all, the others just barely with nothing wrong with my jaw. I think this easy exam is preferable to a lip biopsy which is invasive and from which some people report lasting discomfort. I went to the optometrist to get my eyes checked and they commented how dry they were which I did not realise. So next step was research what can be done to manage Sjogrens.

    In short for me - limit damage to eyes by using preservative free eye drops during day and gel at night. For the mouth oral hygiene is critical. Lots of teeth brushing with very soft brush. I carry around Biotene in a small purse spray, use Xylimelts at night and I have found Olive Leaf Australia Olive Leaf Spray 20ml purse pack the most soothing for when my throat drys so much it hurts and the Olive leaf drops are great. I don't go anywhere without a water bottle to sip on as better than the pain from dry mouth as no saliva to wash away.

    I also have pain in my joints, but the blood test did not show up inflammatory markers from Sjogrens. My GP thinks it is fibromyalgia associated with Sjogrens as suffer from muscle weakness and fatigue as well, so the main thing for that is yoga, strength building exercise and lots of rest when I need it.

    Hope this is helpful to you!

    Another point on addressing the root cause. There are a few library books around about how to reverse autoimmune disease through diet and repairing the gut, and I think this would be a good place to start to improve health for anyone, though not sure if it can be reversed for everyone. Best wishes.

  • My rheumatologist diagnosed my Sjogren's. You mentioned that you also have arthritis, are you seeing a rheumatologist for that? If so, ring the clinic and mention the Sjogren's .

  • Hi

    I have just been diagnosed. I saw my gp and he did some blood tests and ss-b showed positive for sjogren's syndrome. He then referred me to a rheumatologist Dr Cole in Nedlands. I am currently seeing her now and she is running an aray of tests. She is lovely

  • Yes you will definitely need to go to your GP first, tell them all your symptons, she/he should start you off with blood tests and then ultimately a referral for a Rheumatologist in order to confirm Sjogrens....good luck, my diagnosis took around 5years to be fully diagnosed....it was by that time way too late to save my dry eyes unfortunately!:(

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