[rutg]

Hi I have a lot of symptoms that fit the diagnosis of lupus - although I know I may not have lupus. My GP, who is very sympathetic, did two different blood tests to measure inflammation. I'm sorry I don't know exactly what they were. Because they both came back as negative he has said its not lupus.

I just wanted to ask whether you think he is right or whether other tests should be done as well. Thanks for reading this message.

 

[pollianna]

Rut, it may or may not be but the best thing to do is get a hold of the blood tests and let us know what they were. You can call the practice and ask them to send you a copy.

So many things appear to be Lupus so don't worry too much at this stage. I would suggest reading the self diagnosis thread at the top of this page. Also keep a jpurnal of "all" symptoms, even if you don't think they are related to anyhting. It's amazing how weird and diverse autoimmune deseases symptoms can be...

What are you symptoms now?

 

[Katharine]

Hello and welcome

If the tests are only "inflammation" markers then no, he is not right. Lupus sufferers often have quite severe inflammation that doesn't show up in bloods.

The first most important blood test that needs doing is the ANA test which if a high positive would be quite indicative of an auto-immune diease. There are then other, more lupus specific tests that can be done.

Lupus and its diagnosis is extremely complex and most GPs, no matter how good, simply don't have the expertise necessary.

If your GP believes your symptoms fit then I would ask for a referral to a rheumatologist despite negative bloods. Make sure to ask to see someone who is specialised in auto-immune diseases - not all rheumies are.

I hope this helps a bit. If you want to see what bloods might be significant in lupus you can take a look at this link

http://uklupus.co.uk/tests.html

Katharine

 

[Pink Pearl]

Hi and welcome,
Please be aware that not all sle patients have positive ana's. There are a few of us out here who have never had a positive ana. There are a lot more tests which are more specific for lupus than ana. The ACR criteria says that meeting 4 of 11 criteria, with or without lab work, constitutes a diagnosis of sle. Some doctors forget this and automatically rule out sle if the one test is negative.

So, in my opinion, a referral to a rheumatologist is needed. One way to help along your first visit is to keep a symptom journal or diary. Write down what is happening on a daily basis. Then, take it with you to your first rheumy visit. Go over it with your doctor and see what else is there that you may not be aware is happening, but the doctor picks up.
Good luck,
Sally

 

[rutg]

Thanks for this - I will talk to my Dr again. I'm not saying i have lupus, but I didn't want it ruled out wrongly.

I have had many symptoms for 10 years including lots of neurological symptoms e.g. burning pain, patches of numbness, intermittent difficulties with bladder and bowel continence, stabbing pain, etc. As well as tiredness, brain fog, red butterfly rash that comes and goes, intermittent stiffness and aching pain in joints that jumps around to different joints, sores in the corner of my mouth, sore throat, aching calfs when walking, underactive thyroid, mild bronchiecstasis, etc.

I have been tested for a number of illnesses including MS and B12 deficiency, but I wasn't tested for lupus until I recently raised the possibility of this with my GP.

 

[x_claire_x]

Hiya.. think it is time for referral to a rheumatologist knowledgeable in auto immune diseases.. if you haven't already done so. You know your body isn't behaving itself and you need to know what is going on. You are fortunate to have a good GP, they would be even better if they know when they need to refer, so I would definitely ask for further investigation... all the best.
Claire X