how to get diagnosis when bloods are clear but ha... - LUPUS UK
how to get diagnosis when bloods are clear but have many symptoms including marsk, mouth ulcers fatige, joint pain im really struggling now?
Im in a similar position to yourself. I beleive theres some inflamation going on but dont know where or what the cause is.
Iv got another gp appointment coming up ans shes going to refer me to a Rhumy... I also have Hashimotos and many of the symptoms overlap.
I have a similar quandary. My bloods are clear apart from a low (ish) lymphocyte count. I have had to reduce my hours at work due to fatigue, joint pain and blurred vision which is worse when I am tired. The nearest I have to a diagnosis is ' a lupus-like ' condition. It's driving me nuts not knowing what to say to people when they wonder why I have gone to 4 days.I feel like they're thinking 'well we're all fatigued love'.
I find the fatigue the hardest, when your so used to multi tasking now I can't do one thing at a time ! Best wishes x
The American College of Rheumatology had set out some criteria for diagnosing lupus. If a patient has 4 of these criteria present, then it is likely that the patient has lupus. Here is a link that sets out the criteria, among other things. See which ones you have and then go to your GP/consultant with it and get them to explain why they think you do not have lupus if the criteria are met. It doesn't guarantee they will listen but it is a try at least.
I agree with purpletop....it should help! .....blood results alone should not determine a diagnosis. Your rheumy / GP needs to also take into account all of your symptoms.
When I was diagnosed last year my first 2 blood results came back 'normal' despite me having really bad joint pain,mouth ulcers, skin rash, fatigue and hair loss. First I was told I had uctd( undifferentiated connective tissue disease) which is also an autoimmune disease and vwry similar to lupus. My last couple of blood results have shown a decreased 'C3' level which apparently points to lupus! ..... It's all terribly confusing!
Keep going, don't give up!
Good luck and I hope you get some help soon
Xxx
Totally agree with the above advice. Hang in there, trust your judjment and ask to see a specialist. Good luck xx
Hmm. I have thrombotologist confirmed APS and bloods which show positive ANA. I have eight of the 11 symptoms. Dr at St Thomas says I do not have anything wrong! Yesterday thrombo confirmed that following various tests I have lupus nephritis too. Dr at St Thomas clearly discharging people. Ithrpmbo written to GP saying I absolutely must be referred to a rheumatologist and nephrologist. Itd a struggle but we know ourselves better than others. Keep on asking.
Hi, have you seen a rheumatologist because this is the doctor who will give you all the blood test you need to find out weather you have Lupus. I was diagnosed years ago and I have been on steroids ever since. You need the special blood test to determine weather who have it. Take card
If you would like one of our free information packs, which includes leaflets on the diagnosis of lupus, please send me a private message or email me at paul@lupusuk.org.uk with your name and address.
hi! iv just come out of the other side from where you are now and believe me love its a long and hard road but you just have to keep pushing them for the help you need. I was temporarily diagnosed with utcd as well and it frustrated the hell out of me because I have nearly every single symptom of lupus and the blood work came back positive one minute then negative another. after going down hill and going to the hospital mid flare they did more bloods and started me on a steroid jab as an "experiment" to see if it makes anything better. 3 months later I ended up poorly again after having the best 10 weeks iv had in years! this gave her all the information she needed and I was diagnosed fully with SLE and other possible underlying disorders 
keep ya chin up and just try everything they offer till they tell you whats going on!
big loubie loves xxx
Hi,just looking for any info really.Ok I have been under a rheumy since I was 25.Both my parents have RA,mum has sjorgrens and we both have HD.In Sussex just before I moved I tested positive for an anti dna double stranded test (I think that's its name) indicative of lupus and my rheumy put this on the forwarding letter.I went under new people in Oxon who decided there was nothing wrong with me despite what previous doc had said and sent me on my way.I have been back to GP and tomorrow am going to e new rheumy under the Royal Berks hospital.Now I have had flare up after flare up and wrote most of last year off and this year so far already.Those of you who have pushed for lupus dx is there anything in particular I should be saying? Thanks.
