Needing to know if I have Lupus.

[Eatpower]

Hi everyone, I've made a few posts on here regarding Lupus. But I ultimately want to know, in anyone's opinion if they think I have the disease. My blood tests results back in April showed I did have Lupus but when I had another routine blood test it showed negative. My doctor has refered me onto a rheumatologist, because she doesn't know how to deal with this disease. I'll give everyone a rough outline about my health. I suffered with gastritis, severe IBS peptic ulcers and esophagitis. I usually get a lot of tension headaches and I suffer with depression. If my stomach pains get ultimately sore my stomach will start to bruise that looks like a rash and this is why I had a blood test back in April that discovered I had Lupus.

As far as I'm aware I know I don't suffer with the mos common signs of Lupus such as achey joints. But I do suffer with fatigue and the skin rash could possibly be the outbreak on my stomach when I'm in ultimate pain.

I would like as much guidance and understanding to know. I know this sounds horrible but I would like Lupus to be the reason why I've been so unwell for the last twenty years of my life, because it's had such a major impact on me.

[Carcrashgal]

If it's any help, after my first positive bloodtest and diagnosis, the rheumatologist I was referred to said the blood tests showed no sign of SLE; I persisted, and later blood test did show positive. I don't have many of the more common symptoms (like the rash), which is why I think she wasn't convinced, but as per my posts this month, pleurisy and costochondritis brought on such immense pain in every joint (plus a massive spike in the bloodtests) that it is now a *positive* positive diagnosis. And I do understand what you mean about wanting it to have been lupus all this time: just getting the diagnosis - however bad the disease - is a step in the right direction to proper treatment. The reasons for many misdiagnoses or slow diagnoses are, according to my doctor, (a) lupus is still relatively rare, so many GPs have never come across it, or have only one or two patients suffering from it, and at any rate don't know how to deal with it when they do see it; (b), it can be really hard disease to diagnose if you're not in a flare and (c) it often masquerades as something else. It's also true that many people with lupus have other auto-immune conditions too, which doesn't help (look at the number of people on this forum alone!) But whatever you have - and obviously you have *something* - you need treatment, and so you need to persevere. There are also plenty of books out there - I found Triona Holden's TALKING ABOUT LUPUS particularly helpful. And I would certainly join the St Thomas Lupus Trust forum on this site; that've had some really useful information. GOOD LUCK! Jo

[lynzard]

Morning. I know exactly what you mean - you just want a diagnosis for why you are feeling so bad. Been going through that for a long time. My rheumy is worse than useless (tho I have got a diagnosis of fibromayalgia now). I have had positive blood tests for lupus (sle) but he says that I don't have it as I don't have the symptoms he asked me about - hair loss, rash (30% of people don't have rash), or raynauds. I did have an a4 piece of paper with a list of all my other symptoms but he didn't want to hear about those! I truly do not understand how I don't have it when I have positive blood test. I wish you lots of luck as it can take some time to get diagnosed for lupus (for some people). Take care. (This site is great)

[lynzard]

Thank you so very much. Yes I am going to seek second opinion. When he told me last week that despite my positive blood test for lupus I didn't have it I told him oh that's good I can stop avoiding the sun and he said that might not be a good idea! Why not if I haven't got it! You're right, consultants do seem to think we are lower beings who know nothing! Thanks again. x

[netty44]

Hi there, I was the same as you with one positive and one negative test for lupus, then I was found to have very bad anaemia when being tested for something else and also had a flare up when I last saw the Rheumatologist with aching limbs and painful hands and knees, hair loss and mouth ulcers and cold sores. Consequently, she started me on Plaquenil but said it could take up to 6 months to work. I have also had a steroid injection which was marvellous whiIe it lasted and am awaiting another. I have since realised that I have had all these symptoms for over 40 years and that it was lupus all along but nothing much was known about lupus in those days so was told it was various things . I hope you don't have to wait that long! Do a bit of research online to see if you have got it, although it sounds as though you have. Good luck!