Confused about Diagnosis...Please help

Hello all... Hoping someone has been through similar situation. Already know I've got FM. But trying to figure out autoimmune disorder. One rheumy said I tested positive for sjogrens but there was no way to be certain without doing a lip biopsy so he was going to say that I didn't have it??? He left and new rheumt said SB was positive so she was thinking Lupus. Then she screwed me over by ignoring symptoms so I switched to new rjeumy. He retested for sjogrens and said bloodworm was indicative of sjogrens. Ordered the lip biopsy but it came back negative!! It did however, show chronic inflammation. Does this mean Lupus? I know SB is positive for sjogrens and Lupus because I've been doing my own research. Anyone been through anything like this?

8 Replies

  • Hi,

    I haven't been through exactly the same as you, as frustrating and annoying though.

    I am going to see a Specialist Lupus Rheumatologists (initially private, nhs attached) as they have such high expertise. I am wondering if this may help you. X

  • Yes. Will look into it. Thanks, and wish you success with yours... X

  • Does anyone know what the difference is in symptoms between the two please?

  • Hi fibro_why

    I do not know the answer to this myself, but I would definitely discuss this with your GP who may be able to refer you to a hospital clinic that do the all the necessary tests to either confirm or rule out either of these? I think I would explain your frustration to your GP that you have not had any of this explained to you properly? I want to wish you all the best of luck.

    All my hopes and dreams for you


  • Hi fibro_why :)

    It all sounds terribly complicated so not surprised it is frustrating you.

    Like Ken I'm not knowledgeable enough to answer your questions regarding Lupus and Sjogrens but I do have many skin issues that have made me speak to my GP about Lupus as I have many of the key symptoms. However, it is difficult to diagnose due to it being best to take biopsies and blood tests etc when in flare so the inflammation shows up.

    Maybe this query would be better placed in the LupusUK or another appropriate forum where they can give you a more knowledgeable answer or as Ken suggests a good lengthy chat with your own GP about what is going on could help to answer some of your key queries.

    I wish you wellness in your search for diagnosis.

    Fluffies and smiles :)

    xxx sian :)

  • Yes, I just know there are a lot of FM sufferers with multiple diagnoses... Thought I'd take my chance since is the only forum I am a part of. Thanks all! --Jill

  • Hi Jill :)

    I don't blame you for trying all avenues because at times it's what it takes to make any progress :)

    I always come away from consultations in a complete blur and usually cannot remember anything they've said which means I have to research for myself and speak to my doc for answers.

    You're right to want to know what it all means if you're anything like me it's like life is on hold until I get the answer I'm looking for :)

    Of course it is ok to ask here and you may well receive a reply from someone who knows so please don't give up :)

    If there's anything else I can help you with I'd be happy to try :)

    xxx sian :)

  • Thank you so much. As always your support means a lot, sian!

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