Possible SS. Trying to understand whats going on in my mouth with respect to salivation

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Hi there.

So today i got my blood test results which were taken to determing Sjögrens. Guess the blood tests thus far were ok. Had 3 taken. So no arthritis and these prelimary SS things they took were also ok. Or normal.

Tomorrow i am having a lip biopsy done. Anyone had that? Is it worth doing? I have read some horror stories about people having this done and then it has caused some permanent numb spots on the lip. But im having this procedure done tomorrow afternoon. Not scared about the initial little op but teh after.

Also wondering if anyone with Sjögrens has similar experience. I seem to be getting these kind of weird headaches which come more from dry gums or teeth. Hard to explain. Last 2 days when i have eaten dinner. I have begun to salivate after and it feels painful. So i welcome all salivation. I do have some saliva but i feel as i have maybe 50% then i used to. So this whole possible SS thing is quite new to me.

Just has felt weird that when i have begun salivating more there is almost a pain that comes with it. So hard to understand in the mouth or target what the pain exactly is. Not sure if this made any sense.

Anyhow thank your any advice you can give me..


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  • Posted

    My blood test was negative too so I had the lip biopsy. It was inconclusive. No one I've ever talked to has heard of an inconclusive lip biopsy and I felt the lab made a mistake. But regardless I have the classics symptoms. Dry eyes, mouth, nose and ears. I still have a small lump on the inside of my lip from the biopsy but it's no problem. My rheumatologist is treating my dry mouth and my eye doctor is treating my dry eyes. I use a humidifier for my nose.

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    • Posted

      Thank you very much Amkoffee for your reply. Ok that sounds odd. I have this sneaking suspicion that mine is going to come back negative or something similar as to yours. I was expecting something in my bloodtests to come back but everything was fine. Sort of always seems to be the case with me. I was diagnosed with Fibromyalgia back in 2002 and have pritty much learned to live with it. To be honest compared to some I think mine has been much more mild. However this new dryness symptom that just came to light in July this year really has been weird. I guess some ppl with Fibro have dry mouth issues but wow..this really has rocked my world now. Very hard getting used to mouth dryness. Seems to effect my whole well being at the moment. You live your whole life or in my case, with normal saliva flow and then it feels like someone just turned off the tap or something in your body. So i have to wait 2 weeks for the results. If nothing or results are negative, then next steps would be with an endocronologist. For some months i had thought maybe this was stress related and that was causing the dry mouth. But definitely now think this is something else. I have dry mouth, and the tips of of my nasal passages burn now and then. No issues with eyes.

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