Confused

Hi guys I'm really hoping you don't mind me being on here as I don't actually have a diagnosis, I'm wondering if anyone can give me some advice, I seem to have at least 90% of the symptoms of lupus that I can find anyway but all my bloods are ok , is it possible to have negative bloods and still have lupus oh and I get facial flushing in the butterfly pattern but it's not an actual rash n sometimes goes away within just an hour or so and this is what my gp basis his opinion that I don't have lupus, I am looking for any advice anyone has as to what to do next - do I ask for more tests or accept his non diagnosis? ???? 😢😢😢 thanks in advance xx

8 Replies

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  • Hi Mlmcc,

    I'm sorry to hear that you are unwell and struggling to get a diagnosis for your symptoms. Most people with lupus will have some positive blood test results if they have SLE. Some doctors may recognise cases of seronegative lupus, where it doesn't have positive antibody tests, but many do not.

    It could be possible that you have some form of undifferentiated connective tissue disease (UCTD) or a 'lupus-like' disease. These can often present with many of the symptoms of lupus but not enough clinical markers for a diagnosis. They are usually treated with the same drugs.

    It would be best if you could be referred to a rheumatologist - preferably one with a specialist interest in lupus and/or connective tissue diseases. If you let me know what part of the country you are based in, I can provide you with information about any specialists we know nearby.

    If you want 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...

  • Thank you so much for your reply it has been very informative I have never heard of uctd, only thing my doc has said is fibromyalgia may be causing my symptoms but not all of them , my head is spinning with all this well when I'm not so mentally fogged up that I can bearly make a cup of tea , I live in perthshire Scotland my next gp app is in a week or so so I will ask him about the uctd, and if I can get a referal, thank you

  • The specialists we know who would be nearest to you are Dr Nicole Amft at Western General Hospital, Edinburgh and Dr Neil Basu at Aberdeen Royal Infirmary. There may be other rheumatologists nearer to you who are very good though.

    Most GPs may only have one or two lupus patients in their clinic, if any, so they are generally not very experienced in diagnosing and treating it. That is why it is best to be referred to a specialist.

  • Thank you for your assistance you have been really helpful

  • Sorry iv had one set of tests for aps 5 yrs ago and the ana test recent both negative however they did discover as well as my low b12 I have low vit D , but my gp seems very reluctant to diagnose me with anything

  • hi mlmcc

    Reading your posts about diagnosis difficulties maybe you also need to change your GP who sounds very reluctant to help. Low Vit d can affect your health, give inflammation so I hope he is treating you with supplements and sorting the b12 as that too can make you feel poorly!. Good luck for when you see a specialist. Keep us posted. X

  • Thank you, well I didn't get asked to make an appointment or anything I just had the receptionist phone me and say there is a prescription at the chemist for you , no-one told me what it was or how I have low vit D or how to help myself or anything so I think you may be right possibly a new gp is what I need but this is the 3rd one iv had as the last 2 blamed everything on my botched gallbladder op months before hand and my chronic post op neuropathic pain I just need someone to help me get a diagnosis so that I can start either taking meds that will help or start doing things to help myself it's so frustrating and a stress I don't need when my brain barely works at the best of times 😉sorry ranting away here x

  • Hi mlmcc

    So sorry you have neuropathic pain too. Is it being treated with nerve painkillers like Gabapentin or Pregabalin?. I too have it after abdominal surgery and it's no fun!. I take Gabapentin and Amitriptyline and go to a Pain clinic!. They have different ways of treating pain , I have regular injections too!. Your GP can refer you if you don't already go. You could always try a different GP in the same practice , they don't sound very helpful though. Is there a different practice near you you could try?. Diagnosis can be a long road but with persistence I'm sure you will get there!. X

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