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lip biopsy- don't really know anything fully yet

Posted , 3 users are following.

babycham
babycham

Have been waiting biopsy results, although eye consultant had said  mine was secondary. Contacted Hosp who said it is neg.  Its first time I've stopped thinking all these different aches and symptoms were me and I could put a name to it.

I'm helpless when I have pain, feel i'm being lazy not helping on housework 

1 like, 14 replies

14 Replies

  • poemsgalore55
    poemsgalore55 babycham

    Posted

    Hello babycham,

    You really need to be referred to a rheumatologist to reach a definite diagnosis. If your eye consultant says it is secondary Sjogren's, that would mean you already had an autoimmune disease such as RA. Sometimes it takes  quite a while to get these questions answered. But if you don't already have a rheumatologist, it might be a good idea to be referred to one. They will confirm if what your eye consultant says is correct. 

    • babycham
      babycham poemsgalore55

      Posted

      Hello poemsgalore55 (&others who kindly replied), it was the Rheumatologist who did the lip biopsy. Have rang secretary for result, she couldn't say anything medical I was told. Rheumatologist rang me when I wasn't expecting it. My mind went blank, I hardly remember at all. She said not to worry, she was saying there wasnt inflammation but best discuss results when  app booked at end (2nd appears ) sept. My family ask "me does that mean you haven't got sjogrens".
  • frustrated61
    frustrated61 babycham

    Posted

    Hi babycham ~

    I agree with poems regarding Rheumatologist.  When I was dx'd with sarcoidosis, the doctor sent me to a Rheumatologist.  That made a world of difference.  I don't understand the "secondary" to what?  Each autoimmune disease is one in of itself, right?  I mean, I have sarcoidosis and also sjogrens and the doctors never mentioned that sjogrens was secondary. 

    I have two autoimmune dieases and they are treated in many ways the same but there is a few things that deem them one in of itself.  I know I'm probably confusing you and it's because I'm confused as well.

    Perhaps that's where RA comes into play.  Saying that, sarcoidosis and sjogrens also have secondary ramifications as well.

    Bottom line is, I totally agree with babycham regarding a Rheumatologist.  They deal with inflammation and sjogrens is all about inflammation.  I wish you good luck and please keep us updated as this is a learning that compares to none, at least it is for me.

    frustrated

    • babycham
      babycham frustrated61

      Posted

      Hi frustrated61, thanks for your help, I have just got to wait and see. I have really bad eyes at moment,  like ive been in swimming pool with lots chloride. try to rest I think
  • poemsgalore55
    poemsgalore55 babycham

    Posted

    This is from a publication that can be downloaded from the Arthritis Research website, all about Sjogren's Syndrome:

    "Sjogren's Syndrome can occur on its own (when its described as primary) but can also occur in association with another rheumatic disease such as Rheumatoid Arthrits, lupus or scleroderma (when its described as secondary)."

    I have secondary Sjogren's, it i secondary to my Rheumatoid Arthritis.

    • frustrated61
      frustrated61 poemsgalore55

      Posted

      This is an honest question..would sjogrens be secondary to sarcoidosis?  Really am curious.  I don't know the answer to it.
    • poemsgalore55
      poemsgalore55 frustrated61

      Posted

      I'm afraid I can't answer that as I don't know anything about sarcoidosis. If you can get a referral to a rheumatologist, they would be able to clarify the situation. 
    • frustrated61
      frustrated61 poemsgalore55

      Posted

      I do see a Rheumatologist...I think I will just do that and ask him.  I never heard of secondary sjogrens so that made me wonder if mine was secondary...I'm stage 4 sarcoidosis which means it's very active so it does make me believe the sjogrens (show-grins) could in fact be secondary!  Not even sure what that would mean. I will find out and share what I was told by my Rheumatologist! 

      Thanks for the speedy response!

      Frustrated

    • babycham
      babycham poemsgalore55

      Posted

      I have just read your profile - WoW poemsgalore55, five children that's really nice. I hope they bring you joy and help brighten life being there. I know us mothers we can worry as well.

      I will have to look up some of your conditions, I'm sorry, I know nothing about them. By the sound of it you've had a it rough in recent years to say the least

  • poemsgalore55
    poemsgalore55 babycham

    Posted

    Yes babycham, three girls and two boys. 6 grandsons and one beautiful 16 year old granddaughter. Here is my poem about her:

    Willow

    So fair and graceful, the Willow Tree,

    its beauty and gentleness, all can see.

    Its slender boughs trail by the waterside

    serene and restful, brings  joy to my eyes.

    And yet there's no Willow that grows by water

    as gentle and kind as my granddaughter.

    With dark, dark eyes and tendril curls

    she sweetly smiles, and fills my world

    with love forever, and grandmother's arms

    will always hold close her treasured charms. 

    • frustrated61
      frustrated61 poemsgalore55

      Posted

      I also have many grandchildren.  What a lovely gift you gave your granddaughter.  It has made me rethink the past when I was full of poems and wrote them daily.  One day, the poem writing died in me. 

      However, I can see the light in many ways so I will ponder writing a poem for each of my 7 grandbabies and one on the way!

      Thanks for sharing that beautiful poem.  It made me smile!

      Frustrated

    • poemsgalore55
      poemsgalore55 frustrated61

      Posted

      I don't write as often as I used to frustrated,and when I do, I don't feel they are up to the standard they used to be about 20 years ago. I hope you manage to get back into writing poetry again. 
    • babycham
      babycham poemsgalore55

      Posted

      That's really nice, I would love to be able to write like that, keep it up!! your get into your flow I'm sure.what a lucky girl to have that to keep
    • babycham
      babycham frustrated61

      Posted

      If you can write, might take you while to get back into it but dont give up on early attempts you wouldn't lose the skill. 
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