Could I have sjorgens ? Does anyone have these symptoms?

Posted , 8 users are following.

Hi

I'm hoping for some feedback as I'm at a loss as to what's wrong with me.

A few weeks ago I developed a swelling in my neck just under my ear towards my jaw, 7 years ago I had a benign parotid tumour which was partially removed so I automatically panicked thinking it has come back.

Had an ultrasound scan which came back normal, bloods came back normal including a thyroid test.

I am getting earache with it and have such a dry mouth/throat which led me to find this site.

This afternoon I noticed where my earlobe meets my face it looks a bit sunken. I'm so worried, back to the drs on Friday, going to ask to be referred.

Amy advice would be gratefully received.

Thanks

0 likes, 12 replies

12 Replies

  • Posted

    Lynne, I don't know about the sunken part, but the swollen parotid gland could be part of SS. 34 years I was finally diagnosed when I had a left swollen gland - they talked about all sorts of possibilities including a tumour, but a month later when the right side came up fortunately the tumour possibility was discarded and further tests done. Is the area  very hard and visibly swollen? It is worth continuing to investigate all possibilities, but, I said I was diagnosed 34 years ago and just today at age 62 I climbed to 4688m and experienced no altitude sickness so don't be too alarmed, there is definitely a good life on the other side of diagnosis. Best wishes.

    • Posted

      Hi thanks for your reply.

      It is visible and drs say it's more of a swelling than a lump .

      I have slight pain behind other ear every now and again but no swelling , it feels like when you've eaten something sour and you can feel it behind you're ear.

      I'm going to ask for a MRI scan I think as they are more detailed than an ultrasound aren't they.

      Hopefully will get to the bottom of this soon , it's the not knowing what it is that worries me .

      Xx

  • Posted

    I'm just suggesting an alternative to Sjogren's. I wonder if you have a saliva gland that has plugged up and is swollen and infected. That's just a suggestion. But you definitely need to pursue this with your doctor. And be sure to advocate for yourself. Don't let him brush this aside.

    • Posted

      Hi

      Thank you for replying .

      Do you think a swollen and infected gland would show up on an ultrasound scan ? I'm going to ask for a MRI as I think they are more detailed aren't they.

      Lynne

  • Posted

    I think an MRI probably shows more however there are times when an ultrasound is more appropriate. For example when they check for blood clot in the leg they do a sonogram but when they're checking for a blood clot in the chest they do an x-ray. So I think it just depends on what the radiologist and Doctor think is the best test to have done. I suspect an ultrasound would be cheaper than an MRI.

    • Posted

      I just don't get what it could be, ultrasound results say no tumours and no swollen lymph nodes, normal soft tissues yet I still have this swelling, confused.com

    • Posted

      Please try not worry..stress makes things worse, I had exactly the same tests, nothing else was found, and it did hurt, I was told by one doc that it couldn’t possibly hurt, but it did..it was swollen therefore pressing on something...I’m afraid doctors sometimes just get it wrong, I got a good a good gp, by shopping around and  asking various ones were the up on the knowledge of SS. Take your health into your own hands Lynne, no one knows what you go through but you, Be blessed Lynne have a good weekend,🙏😘😘😍

  • Posted

    If you could tolerate an ultrasound onto swollen section I would be amazed. My parotid swellings are intensely painful to the touch.
  • Posted

    Hiya Lynne, I was first diagnosed with SS 39 years ago now, and it was just that swelling that got me finally diagnosed..like others have saud..don’t know about the sunken ..mine was very swollen and still gets like that toda. Dry mouth and eyes are part and parcel, I use drops for dry eyes, and spray fir mouth, there a lots over the counter meds like these, they are most helpful, a heap of people with SS also have other autimune issues like Fibromyalgia and lots of other..I have a few condition, but they are not as bad as when I first was diagnosed, the biggest problem is these conditions take soooo long to diagnose because there are so many overlapping symptoms,  and each patient might have totally different symptoms too, but a rhumotologist is who diagnosed you usually, unless you have a special GP, who knows all about the condition..I do hope you get a diagnoses soon, be blessed Lynne and have a great weekend..🙏😘💐

    • Posted

      You couldn't be more right about trying to get a diagnosis. My lip biopsy came back inconclusive.(very frustrating) But in my opinion and my doctor's opinion I have Sjogren's. I mean I have the dry eyes and the dry mouth that comes with Sjogren's. And frankly if you have Sjogren's there's no particular medicine to take to fix it or control it it's just a matter of treating the symptoms. So we are treating the symptoms for the dry eyes and the dry mouth.

  • Posted

    Me again, I also had lots of tests for this..which all came  back clear...including CT scan..😍👍

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.