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.

C

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  • Posted

    Hi I had my lip biopsy 3 years ago . it is the best way for them to confirm you have SS. You'll be ok . for me it was a few months that I had a bit of numbness. You shouldn't always believe everything. You read, everyone of use are different . I get pain in my teeth and gums most day. And of let my face . You will find ways that help you . Soft food for me and lots to drink. I do hope that you will be alright.

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    • Posted

      Thx very kindly for reply Wendy. Do you take anything for the pain. Like so far i since this all started i have had pain everyday. But i cant start eating pain killers everyday either. Mouth pain is a very unique kind of pain. Just different experience. Thx again!

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    • Posted

      Hi Chris, for my mouth i now have my dentist has given me Difflam oral rinse . It helps with the pain and helps when i eat . And you must get Duraphat fluoride toothpaste its a lot more gently in your mouth.Im now on Methotrexate. as my SS has now started to dry up my lungs. It seems to take some time for the doctor to put you on the right drugs. But what is right for one person isn't right for an other. All i can say is rest when you need to drink lots of water, you'll need lot of moisturiser. Try not to be to hard on yourself. When you find that you can't do things , be open with your doctor because you are the only one who knows your body. One of the thing i find sets me of is stress . Ive had to change my job so its not so stressful. And I've cut out the people in my life that to would make it stressful.You have to look after yourself . I'm lucky and have good family and friends. Who now understand a little of what is happening to me. But it has taken me some time to understand it myself. There isn't much info out there as the doctors don't yet fully understand what we have.

      I do hope you will be ok .

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  • Posted

    i have recently had severe headaches that have been so bad that i ended up in the ER 3x's thinking i was having a mini stroke. i had no idea that this diease can cause damage to the blood vesseals in your head. Now when i get these headaches they wipe my energry away. i had test done for how much saliva i produced in my mouth years ago but have not had a biopsy of my mouth. They do Believe that i have more then one auto immune disease... they are looking at Lupus now. i wish good luck and hope that u can get answers.

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  • Posted

    Chris, hope the lip biopsy was not too painful. So far you do not have many symptoms. Usually there is extreme dryness of eyes and mouth, plus a 'fuzzy' tongue, which takes away from usual eating sensations. I believe that there are around 10 symptoms. Also the mouth sores are dreadful, at least for me. Hope all goes well.

    Sally

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    • Posted

      thanks kindly Sally for taking the time to write me. Yes, had the biopsy today and it went very well. 2 weeks now i will have to wait. So yeah dry eyes i have and then tips of my nasal passage, just the edges burn now and again. My tongue at times looks pritty fuzzy or dry. Not too sure what a fuzzy tongue is. But it definitely looks dry and feels dry, and is sore when i push it down for example. Thx Sally!

      C

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