1. Community
  2. Bones, joints and muscles
  3. Sjogren's Syndrome

Question about diagnosis

Posted , 5 users are following.

bNICE2_ME
bNICE2_ME

Hello.  For years, I assumed  I had Chronic Fatigue Syndrome because, well, that was in the 90's and that's what the medical specialists told me it must be.  I experienced a very bad bout of debilitating symptoms for several months in 1990 and the only unusual reading indicated on the blood tests was a very high titer for Cytomegalovirus.  This serious bout passed after a few months and then came & went. To this day, these symptoms just hit in waves, lasting sometimes for one day and sometimes for a week, but the occurrence is becoming more frequent. In 2012 my primary doctor finally sent me to a rheumatologist who did some additional bloodwork, which flagged a 1:40 H Speckled pattern on the ANA and everything else seemed okay.  They said that was nothing abnormal. The bouts of these symptoms is not getting better, so I visited my primary again and discussed my symptoms.  He was extremely dismissive of them and asked why in the world I might suspect I have Sjogren's Syndrome. Truthfully, I have never even heard of it until I googled my symptoms. The doctor started arguing with me saying the symptoms I was discussing can't really exist because he didn't have record of them. It seemed ridiculous.  He agreed to send me back to the rheumatologist.  Is there any test to request to find out about this for once and for all? I am so weary of not knowing what is wrong with me!

0 likes, 3 replies

3 Replies

  • Megheart
    Megheart bNICE2_ME

    Posted

    Grrr! Aren't doctors arrogant sometimes?

    As it was 2012 when you last had the ANA done hopefully the Rheumatologist will order another ANA and also get the panel for ENA's. The ENA includes the Sjögren's specific Anti Ro (SS-a) and Anti La (SS-b) tests. The ENA's also include the Lupus, and Scleroderma etc markers

    I hope you get some satisfactory answers to your long standing health issues. Some people think that having a 'label' to ones condition doesn't matter, but personally I think it is very validating to have a correct diagnosis quite apart from being taken more seriously by the medical profession. Being able to get the correct treatment from a correct diagnosis comes into it as well! 😀

     

    • bNICE2_ME
      bNICE2_ME Megheart

      Posted

      Thank you, Megheart.  I will certainly heed your suggestions!
  • margaret22116
    margaret22116 bNICE2_ME

    Posted

    hi, I read your post earlier. I thought that the speckle pattern on the ana was more indicative of Lupus however I may be wrong. However, there is so much overlap in symptoms it almost doesn't matter. What matters is getting a proper diagnosis and getting help with your symptoms. 

    Makes me so angry when doctors are so oppositional about this kind of illness. No wonder it takes years to get a diagnosis. I would contact the Vasculitis Foundation over there and ask for their advice and guidance. And make sure you get that referral. I understand what it's like to suffer like this without proper diagnosis. I was in the same situation for year.s I have another form of vasculitis (Behcet's) and appreciate how unwell you must feel. x

Back to top

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.