Help! Symptoms/negative test

Hi I'm new here. I've been having all the symptoms of lupus and had some blood test done (not sure which) but nothing is showing up! I've been really bad the last few months getting worse the last couple of weeks, so was shocked to find out that nothing has come back. Could it still be lupus?

I'm really struggling and feel like nobody's listening they are referring me to rheumatology but feeling quite defeated.

5 Replies

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  • Many of the symptoms of lupus can be the symptoms of other autoimmune disorders - and rheumatologists deal with them. Just because the blood tests don't show lupus it doesn't entirely rule it out but there are lots of other things it might be. Until you see a rheumy though you will probably have to possess your soul in patience as my mother used to say! I know it sounds hard - but that is the way it is until you see the experts.

  • Hi Charliebug,

    PMRpro is right. Patience is something we all need whilst trudging down the path to diagnosis. It sounds like you have a good GP to refer you so quickly - it's taken 10 years of misdiagnosis and I've only just been referred to a rheumatologist. You could be in for the long haul but you have found the best place to be - here😁😁🖒🖒. The advice is amazing and support is second to none. Read through old posts, it's - I wouldn't say encouraging - but it's good to know you're not alone.

    Keep in touch - even if it's to let off steam, we've all been there and when we say we understand, we actually do.

    You're on the right road, just keep going.

    Best wishes,

    Charliebear xx

  • Hi Charliebug,

    PMRpro and Charliebear68 have given you some great comments. It is very positive that you have been referred to rheumatology for further investigations because they will have more experience with autoimmune conditions. There is a chance that your symptoms could be caused by lupus, or they may be caused by another autoimmune condition. With negative blood test results it is possible you could have some form of undifferentiated connective tissue disease (UCTD).

    If you would like more information about lupus and how it is diagnosed, you can request or download one of our free packs at lupusuk.org.uk/request-info...

  • Thanks everyone for replying. It really helps speaking to people going through things too.

    It's been years of lots of different things, it gets to a point where you think what is normal. I've been in some sort of pain for the last 10+ years, I'm 31. I've had 4 ops to do with gynaecology problems, had my gall bladder out, had problems with scarring tissue, and stomach pain. My joints have gone so bad the smallest task is painful, my bowls have gone crazy, I'm exhausted all the time. It gets you down, especially having two boys to look after 4&6, but to be fair they do make my days better 😊

    When the doctor mentioned lupus I looked it up and I couldn't believe there seemed an answer for what I was feeling. Plus the rash, I had been getting for years that I'd put down to some weird heat rash, but it wasn't normal, it was raised angry and looks exactly like the pictures.

    I think I was just hoping for answers finally! But never mind, medication is helping for a minute until I can see rheumatology.

    Thanks again xx

  • This forum keeps me sane!

    Welcome to the family xx

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