seronegative lupus?
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hey im just wondering dose anyone in this group have seronegative lupus? if so how did you go about getting dignosed? I have been told by a cosnlant that I have the symptoms to match up a digonese but they wont dignose me as it wont show up in my blood.
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margaret22116 seanto
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Hi I don't have Lupus but Behcet's. Very similar. My blood tests are often unremarkable. I was diagnosed on history mainly. I had raised inflammatory markers. Raised esr and crp. Apart from that nothing. Lupus is the same. Blood tests alone are not proof.
You may need to change consultants x
seanto margaret22116
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margaret22116 seanto
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Why did they suggest Lupus in the first place? What were the problems which led to that tentative diagnosis?
seanto margaret22116
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margaret22116 seanto
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seanto margaret22116
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margaret22116 seanto
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I see from another post you also have been diagnosed with fibromyalgia which is another indicator of auto immune disease. But you were seeing a neurologist. Have you been referred to someone else now?? You say you are seeing a 'consultant' but don't mention in what. A neurologist would not be able to diagnose you. x
seanto margaret22116
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years ago I was sent to a neurologist that told me that I probably have fibromyalgia but back then I only had muslce aches and pains. suggesting I go back to my gp who agreed with him but did nothing to help me. Though I was never given a fomal dignoes, it was just surgested. At the time I took for an answer but when my health started to detrate in ways that didnt match up with fibromyalgia I went back to my gp.
I then had to go down a long route of getting a gp that wanted to deal as most would ether try one option or just send me away depsite my problems getting worse as time went by. First I was sent for physiotherapy that didn't help then on to an endocrinologist who concluded that my issues where not to do with my thyroid or vit d and recomened I be seen by rheumatologist. I now have a nice gp who got sent to see a rheumatologist which happened end of last year, in which on my first appoiment suggested I might have lupus. I was then seen four more times by them once for a review and the three other times because when I rang up the suport line for advice due to felling ill they gave me an in house appoiment. Each time I went in they said they where not going to help as it wasnt in my blood. So I asked my gp to send me to a speliclist who also said he wouldnt help me due to it not being in my blood despite turning up ill. Over the past week and a bit I have gone/am still going through what I belive to be a lupus flare up as the symptoms I have match up to it.
margaret22116 seanto
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Ok so I know....you've been to hell and back. I been there too. Horrible isn't it. No one will treat you or take your symptoms seriously. I had a history like you. Where in the country are you based and I will get the name of someone nearby who can help with your diagnosis. If you don't want to put it on the forum private message me instead. I only need a town or city and I can suggest a course of action for you.
seanto margaret22116
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yeah its pretty annoying especily when you turn up too someone ill who would of happily helped me had it been in my blood. I'm sorry you had to go through something simular. I live britsol way, so any names you had would be very greatful as longs as its not the guy in bath as I have been there. Thank you so much.
margaret22116 seanto
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Ok there is a 'Connective Tissue Disease Vasculitis Service' at North Bristol NHS Trust. Also I totally recommend getting in touch with Vasculitis UK an amazing support group. They can help with info and support and recommending good places to go for diagnosis and treatment. Google them and get in touch
margaret22116
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