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Persistent swollen lymph nodes and negative blood tests

Posted , 7 users are following.

joanne57522
joanne57522

I'm still waiting on my lip biopsy results but just wondering if anybody has persistent swollen glands in their neck and under chin (had mine for months) and how many people had all negative blood tests??

Many thanks!

1 like, 13 replies

13 Replies

  • caroline-ian
    caroline-ian joanne57522

    Posted

    Yes I have had swollen gland around my jaw and below my ear several times, it's very painful indeed! I was given anti inflammatory and antibiotics in case of infection! I haven't suffered from this for quite a while! Best wishes xx
    • joanne57522
      joanne57522 caroline-ian

      Posted

      Did you have them persistently? Might aren't really painful but just always there! Thank you for your response xx
  • shaq26875
    shaq26875 joanne57522

    Posted

    I had swollen lymph glands (looked like mumps) which were diagnosed as infection of lymph glands and given antibiotics for 7 days. The glands remaiend swollen I wetn to ENT when 2 weeks later still swollen. He said swelling consistent with infection (did ultrasound..found 1 gland was 8mm and another 1 was 5 mm) -all this was before I was diagnosed with SS...and no 1 made the connection if indeed there was any...,

    ​I didnt think there was any. I used to get a lot of strep throats in the past and tonsil stones..but havent had any for the last year. Though I do suffer from hoarsenss, sore itchy throat , irritated ears ,all on the left side, and burning nose , and constant burning tongue (also have GERD and Barretts so maybe that expalins it ?) 

    ​My blood test for SS was positive.

    • joanne57522
      joanne57522 shaq26875

      Posted

      Thanks for responding! I started off with having an ultrasound on a couple of thyroid nodules and the doctor said I had 3 swollen glands too, now there's about 4 more with the more symptoms that pop up! This and a negative blood test had made me suspect possible Lyme but I suppose I'll just have to be patient and wait for my biopsy results! Thank you for your response x
    • shaq26875
      shaq26875 joanne57522

      Posted

      i was offered a lip biopsy as well but as it around time I was going away on holidays I postponed it , then i had a problem with insurance providers, by the time all this was sorted my saliva was back to normal so I opted not to have the biospsy as the rheum confirmed that it might be negative as my saliva was normal.

      Let us know how the results went

    • Kablois
      Kablois shaq26875

      Posted

      Does your saliva level vary over time (you say it was 'back to normal')? ie. symptoms get better and then worse periodically? Thanks
    • shaq26875
      shaq26875 Kablois

      Posted

      Yes it does Kablois , i get flare ups which then subside and everything returns to normal for a while...recently myknucles and wrists are givinh me problems...even sipmle things like changing bed linen gives me sore, itchy,red knuckles and wrists or opening a jar /bottle which is tighly closed also gives me similar problems. I could start the plaquenil again but have decided not to.
    • Kablois
      Kablois shaq26875

      Posted

      Thanks. As I am right at the beginning of my journey with this disease, my biggest and most pressing query is whether I am going to have bad symptoms every day, pretty much all the time or whether I am gradually going to feel worse and worse over time or whether I can hope for calmer periods which are relatively symptom free interspersed with flare-ups. 
    • shaq26875
      shaq26875 Kablois

      Posted

      hopefully you will have calmer periods intersperesed with flare ups. I was given plaquenil (and predisolone)  at the start of my diagnosis which I religiously took for a few months . When my saliva returned to normal levels (and all joints back to normal) i stopped ..(Though must say at that time I was on lots of different meds for different conditions and when 1 consultant told me I could stop all meds for condition he was treating me for,  i decided in my infinite wisdom to stop all meds. At the moment i can cope with intermittent swollen joints/pain... I may change my mind about meds if I feel worse.   
  • joanne57522
    joanne57522

    Posted

    Hi all, I had my biopsy result back today and it's negative for Sjogrens...back to the drawing board!

    X

    • shaq26875
      shaq26875 joanne57522

      Posted

      Oh no ! for me  its better to get a diagnosis at least then treatment can start ..instead of being told everything is clear but take this med. and come back and see me in 2 weeks time sad  

      Hope you get sorted soon

  • john39808
    john39808 joanne57522

    Posted

    Hi Joanne,

    Have you had any success recently with a diagnosis? I have some of your symptoms and I'm also trying to deal with progression of symptoms. I hope you are doing ok.

    J

    • Cowgirl918
      Cowgirl918 john39808

      Posted

      I am also fairly recent in my diagnosis but not symptoms. Have had those for years. What type of progression are you seeing? Feel free to start a new thread and I will respond.
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