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Sjogren's Syndrome

Posted , 5 users are following.

pam_87693
pam_87693

Hi I am Pam from the FB group British Sjogren's our adminis are members of the BSSA the charity for helping to support people who suffer with dry eyes and mouth. The Sicca symptoms of Sjogren's. I am negative to the Sjogren's markers but have a positive ANA. If you can relate to this please either phone the BSSA or ask to join BS as we have a number of seronegative Sjögren's in our group. Many have a cascade of symptoms which could relate to either another autoimmune disease or to you being double jointed either now or historically. I was Beighton 9/3 now this is now called being Hypermobile, if you then get dryness, then have fibromyalgia, ME or chronic fatigue syndrome you may have Sjogren's. If you have had a very positive ANA that has quite a high titre mine 20 years ago was 320 (remember if you are taking an anti rheumatologigical drug like Methotrexate) it stamps out your ANA you may have symptoms relating to POTS. If you think any of this might relate to you please look at POTS UK website on Patient UK 

1 like, 26 replies

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  • kitkatninja
    kitkatninja pam_87693

    Posted

    Hi All, also a member of the FB group British Sjogren's as well as a member of the BSSA.

    It's a good growing group smile

    -Ken

     

  • maureen42261
    maureen42261 pam_87693

    Posted

    I have sjogrens, but have been told there is no cure for it, and they have idea what causes it. I suspense I shall have to grin and bear it, and just hope research will have some help in future
    • pam_87693
      pam_87693 maureen42261

      Posted

      The most important thing Maureen is early detection is essential. The sooner you get a proper diagnosis the better your quality of life
  • charlotte_64641
    charlotte_64641 pam_87693

    Posted

    Ah yes I think I've heard about you Pam, didnt you get asked personally by Dr price to set up your group? And you are a medical advisor on a eds group? I have to say it's great to have people like you around smile
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