seronegative lupus?

Posted , 5 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

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. 

0 likes, 24 replies

Report

24 Replies

Next
  • Posted

    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

    Report
    • Posted

      my blood markers show nothing. the only things that show up are that my thyroid is low and that sometimes my red cells and vit d drop. I have seen two consultants with one being a specilst who dont agree with the idea of seronegative lupus. So im lost with what to do as I currently going throug what I belive to be a flare up. 
      Report
    • Posted

      Do you have butterfly rash at all.....flushing red in the face/neck area?

      Why did they suggest Lupus in the first place? What were the problems which led to that tentative diagnosis? 

      Report
    • Posted

      Butterfly rash is one of the common syptoms that I dont get. It was suggested because i get joint pain/ aches, swelling of joints in heat, fatigue, pleurisy, previous neutropenia and lymphopenia. They said it would also exsplain why my iron levels keep dropping. 
      Report
    • Posted

      Yes also low vit d and thyroid issues can be significant in auto immune disorders. There are possibly other types of vasculitis it could be. I can only say that maybe you need a second opinion. However I would also point out it took over a year of seeing an immunologist for me to be diagnosed. I now have my treatment with a vasculitis specialist which is most sensible move I ever made. I saw a rheumatologist who was useless to me. Select carefully where you go for diagnosis/care. Expertise in this area is patchy.
      Report
    • Posted

      Butterfly rash is one of the common syptoms that I dont get. It was suggested because i get joint pain/ aches, swelling of joints in heat, fatigue, pleurisy, previous neutropenia and lymphopenia. They said it would also exsplain why my iron levels keep dropping. 
      Report
  • Posted

    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

    Report
    • Posted

      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.  

      Report
    • Posted

      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.

      Report
    • Posted

      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.  

      Report
    • Posted

      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

      Report
    • Posted

      thank you so much for your help. I rang vasculitis and they gave me details of someon they recomened at the other hospital in bristol(bri). Though from a quick look at North Bristol NHS Trust it looks like they might also have someone worth looking it. 
      Report
    • Posted

      Oh superb. Very pleased you got in touch. I would go with their recommendation. They are so in touch with their members and know where treatment is good.
      Report
  • Posted

    Oh and also there is a great support group on facebook if you get a diagnosis. People always have great tips and share experiences . Let me know how you get on. X
    Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up