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maureen_43624
maureen_43624

I have sjogrens syndrome and have been asked by my consultant to agree to a lip biopsy. Can anyone please offer any advice about the benifits and experiences of this proceedure? 

 Mo

0 likes, 14 replies

14 Replies

  • shaq26875
    shaq26875 maureen_43624

    Posted

    Hi Maureen, I was advised same. I didnt do it for a number of reasons...my blood test already showed I had SS, and by the time my insurance approval came throu for lip biopsy  i was going on leave and didnt want a sore mouth. On return , my saliva was back to normal and the rhuem agreed that a lip biospy wouldnt neccessarily show SS if saliva back to normal.  
    • maureen_43624
      maureen_43624 shaq26875

      Posted

      Hi Shaq, 

      I'm not sure my reply to your message went yesterday so just incase let me thank you again for your advice. 

      Mo 

       

  • debraUK
    debraUK maureen_43624

    Posted

    Hi Maureen. Please be aware there is a small chance of nerve damage and no guarantee of conclusive diagnosis. Your doctor should be able to make a diagnosis from your symptoms. I had biopsy and had nerve damage which thankfully resolved almost entirely after three months. The results were inconclusive (not enough cells positive). Everyone is different but I wonder why were put at risk if this procedure isn't 100% necessary.
    • maureen_43624
      maureen_43624 debraUK

      Posted

      Hi debra, 

      not sure my reply to your message was sent correctly yesterday as I cant see it in the chain. So just incase  please accept my thanks for your reply again. It must have been very scary for you but I'm so pleased you recovered. 

      Best wishes Mo

    • debraUK
      debraUK maureen_43624

      Posted

      Thanks Mo

      All the best with your decision and management of SS X

  • christine26761
    christine26761 maureen_43624

    Posted

    My advise wooud be, dont have it...thats only me personally..ive had SS for over 30 years now, i was diagnosed immediately, then a few years later i was diagnosed with Fibromyalgai..it seems easier to diagnose SS too.. so i reckon you dont need a biopsy....its up to you really..rembering that we are all different..have peace maureen..there are heaps of good mouth sprays and eye drops out there..be blessed, have a lovely day..😚😚😚😚
  • christine26761
    christine26761 maureen_43624

    Posted

    PSs..just wondering if youve already been diagnosed with SS..what is the doctor expecting to find?? Im perplexed.😔.
    • maureen_43624
      maureen_43624 christine26761

      Posted

      Dear Christine, 

      thank you for your advice and best wishes. 

      I have had SS for three years now, confurmed by two blood tests a year apart. 

      One consultant at Guys said last year that it was a regular procedure but up to me. The consultant I saw last month said it was essentual to monitor 

      progress of the disease in relation to secondry conditions. That would indicate futher tests later on! 

      My instinct is to refuse it at this stage. 

      Thank you for taking the time to reply, take care of your self. 

      Mo 

    • christine26761
      christine26761 maureen_43624

      Posted

      Thanks maureen..i'm in Australia..Husband is a cockney he says that Guys Hospital is one of the best...this must be a fairly new procedure if they say its " regular" i just havent heard if it..must ask my doctor, see what benifits it has if any.....be blessed..😘😘
    • maureen_43624
      maureen_43624 christine26761

      Posted

      Ah, fantastic Australia! I visited for the first time last January soending four weeks in Sydney and  druving to the barrior reef, winderful! 

      My father was a cockney as well! Yes Guys is great....but conflicting opinions   

      So depends in who you see in the day. 

      Best wishes ti you both, 

      Mo 

       

    • christine26761
      christine26761 maureen_43624

      Posted

      Use to live in Sydney..moved 20years ago..I love the Great Barrier Reef, we've been to Daydream Island and snorkeled on the reef ..a few times..twas just amazing..we live in Tasmania the island state at the bottom..lovely one day pefect the next..lol

      😘

  • jordan58854
    jordan58854 maureen_43624

    Posted

    I was told the only reason to get a lip biopsy is if there is anything in the bloodwork that indicates lupus so you know if it is primary or secondary ss. It will not change the treatment for ss. I said no to the lipbiopsy when the bloodwork was clear. Do you think you have symptoms of lupus?
    • maureen_43624
      maureen_43624 jordan58854

      Posted

      Hi Jordan, 

      thank you for your reply, 

      yes could be to assess for other conditions and I have had ME in the past that is very close to lupus. SS confirmed by two blood tests iver three years so no dought of this diagnoses. 

      i am going to refuse the proceedure unless the consultant can convince me of the benifits.

      Thank you again Jordan. 

      Mo  

    • jordan58854
      jordan58854 maureen_43624

      Posted

      You're very welcome. It appears many other posters agree that the blood work and symptoms are more accurate. Another post said something about nerve damage from the lip biopsy, so protect the saliva nerves in your mouth and take care. 
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