Autoimmune Rheumatic Disorder

[Annalouk]

What does this mean exactly? I have all symptoms of lupus but have been diagnosed with this instead. It seems like a vague diagnosis...

[lupus-support1 Administrator]

Autoimmune rheumatic disorder = that you have an autoimmune condition associated rheumatology ie this is a blanket explanation without giving a specific diagnosis of systemic lupus erythematosus.

Why? I know this is frustrating BUT your doctor will not give you a diagnosis without being as certain as s/he can be that you have, for example, SLE. To give a wrong diagnosis is traumatic for the patient and can lead to an issue of trust. How can you trust a doctor who gives a diagnosis and then says the diagnosis is "wrong".

Contrary to most diseases, diagnosing SLE is very difficult. Lupus is called the "face of 1000 diseases" because it can mimic virtually every disease. For the lupus patient who has "the malar rash" (confirmed by biopsy),a positive ANA and lupus nephritis (a specific kidney involvement), the diagnosis is easy. However, most patient do NOT present in this way.

It is not uncommon for patients to have to wait months, sometimes years for the diagnosis. During this time, your doctor will be observing you carefully. S/he will note any new symptoms - indeed, many patients develop symptoms over time. This does not mean you will not be treated - your symptoms will be treated. There is no cure for SLE and therefore lupus specialists/rheumatologists will consider the form of treatment each patient will need. No two patients will be exactly the same.

You will have regular blood tests and your doctor will get to know you and your body. After seeing a variety of rheumatologists - not all rheumatologists are expert in lupus - I found myself seeing one of the foremost lupus specialists in the world. Even so, it took him 18 months before he was certain that I had lupus. It did not make any difference to my treatment plan.

My advice to you is this: if you trust your rheumatologist and know that s/he sees lupus patients at a clinic or hospital, then do not worry about the "diagnosis". I would encourage you to speak to your doctor and express your confusion and if your doctor is good - and there is no reason to assume otherwise - s/he will give you the time to explain what s/he is thinking.

I hope what I have to say is helpful. By all means post this question on our other website: LUpus Patients Understanding & Support (LUPUS): the LuPUS Message Board which can be found here: lupus-support.org

You will need to register to have access to all the forums. Registration is free. We also specialise in psychological support - which is why our main site is there since it has better privacy.

If you need any help or would like to talk more, you can email me: roz [at] [lupus-support] [dot] [org] [dot] [uk]

With good wishes,

Ros