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.
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
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.
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?
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.
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.
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
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.
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.
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.
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.
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
Helpline for vasculitis uk 0300 365 0075
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.
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.
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
Hi yes I'm SERONEGATIVE to Lupus and to Sjogrens but that doesn't mean I haven't got them! To be SERONEGATIVE you may have arthritis be it RA Psoriasis type or osteoarthritis and to have been diagnosed with pain for more than 3 months. So you have to think back to when all this happened and why, as Lupus is a very difficult disease to predict even by a top professional. So I'm 69 and can remember I had mouth ulcers age 3 then I was very ill as a child I'm hypermobile too but that isn't a disease but could be a contributory factor. My mother gave me Lupus and PsA then my hypermobile father messed up my hormones and I was really in a terrible state during my teens. However still however ill you are you must have a marker in your blood to have an autoimmune disease this is called an ANA your GP can do this its a simple blood test. I hope this helps you.
I am little suprsied how you open your reply with saying you have it but end it saying that it needs to show up in your bloods as that in itself controdicts it self. As to have serongativety you wouldn't have ana markers. In fact the word pretty much just means testing negative for blood tests. So there for its possible to have coctail of symptoms and it still be lupus. You dont even necessarily have to have things like ra or other conditions it could be straight up lupus. The only difference being that seronegative lupus is harder to dignoses as lupus is to do with you immune system that can show up in blood test with things like ana.
I have a lot of symptoms related to lupus in fact I belive I'm going through whats known as a lupus flare up. As I have spent a week and half with Fatigue, muscle pain/weakness in legs, arms and ribs. I also have/had stomach ache and nausea that gets worse in warm environments. Yet I am told I dont qulify for anything more than pain meds due to not having it in my blood but the pain meds do almost nothing. Quite often it takes away the pain for short moments but then comes back as im not targeting the clasue of the pain. So I was suggested to use this website by "a gp" to help find a treatment plan. I decided to start off by using the symptom checker which told me it might be lupus like I suspected. So I came to the forum to figure out how to get help for seronegative lupus as no one other than my nice gp whos on holiday wants to help me.
Yes Lupus will often not show in blood tests like Behcet's and all forms of vasculitis. There is no absolute blood test. They are doing work on this in Cambridge at the moment at Addenbrooke's. They are trying to develop a blood test to use in diagnosis. Let us all hope they can do it soon. So many people are suffering and not being diagnosed. So sad.
What kind blood tests have you had? All my ANA Direct tests come back negative but FANA come back positive. 35% of all Lupus patients test negative on ANA Direct. FANA testing is considered the gold standard.
Also, don't be discouraged if you keep testing negative. I've heard of cases where patients are symptomatic for years before testing positive. Additionally, people who test ANA positive, may test negative in the future. This complicates diagnosis and one of the reasons it can take years for doctors to determine what is going on.
Have your read "The Lupus Encyclopedia"? I highly recommend it. It helps explain a lot about all the tests involved.