I have had many symptoms for some years now recently a high titre 2560 after vB12 was low waiting 4 rheumatologist app tired and achy

Especially feet and legs back ache head aches bloating pain under right rib cage many other symptoms . I was going to doctors for years saying I didn't feel right they put it down to stress getting older all that stuff . I started to feel like a hypochondriac so I decided to just put up with feeling unwell. It was only picked up thrue the VB12 being low actually looking forward to rheu app to finally find out what's going on with me I always knew there was something not right , my sister had Lupus also

4 Replies

  • This sounds like tje experience of soany of us. Even now with a diagnosis my gp seems quite angry with me because another gp in the practice made a referral to St Thomas' for me which he had failed to do. He minimises the APS side of my condition and also has given seriously damgerous and ill informed advice on that too. Its a lonely place to be and has all but cost me my marriage too. :-(

  • I have had lupus for 27yrs, it took painfull joints, serious case of acne, blackouts and constant tiredness, I was even refered for phyco' therapy before I was properly diagnosed, back then , the GPs in the town were I used to live had no clue about lupus and had to refer to their med' books. Iwas later referd to rheumatology. Like you said , you start to question yourself, because, my family couldn't get their heads around it all and thought I was exaggerating things, the blackouts left me with memory loss and to keep notes, up to now my memory is much better but still abit forgetful. But over the years you find ways and means to get on with life. I always felt the less I knew about lupus, the less I would stress, but how wrong was I? I'm new to this site and find it so informative especially knowing that I'm not alone. Keep well. :-))

  • Thanks I am writing down all my symptoms I have had over the years for my Rheumatology appointment it's over a month away unless there is a cancelation sooner . I also had four unexplained blackouts/ fainting spells over the years also , now wondering if this was another symptom . I will just be relieved to know what it is because of the high reading if 2560 from the ANA test and my sister having lupus I've probably convinced myself it is Lupus so many symptoms that fit. I am feeling sick a lot in tummy at moment and a lot of head aches as well as the body aches and I feel depressed as well . Can anyone tell me what is likely to happen at first rheumatologist appointment ? What other tests do they do to determine Diagnosis ?

  • Had my first rheumatologist appointment he is treating me for mild lupus with plaquenil sent me off to have more blood tests and urine test go back in three months . Basically if the medication works then he's sure it is lupus . I wish it was something that was easier to diagnose. Hopefully the plaquenil works and I can get back to my exercise routine

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