St Thomas Lupus Trust
1,186 members120 posts


Hi all I'm nearly 100% sure I have SLE. I have come to this conclusion by obtaining my medical notes for the last 10 years as my doctors seem to be reluctant to believe me when I say there is much more going on than just depression!! Which is what lthey have been telling me since the birth of my second child, during childbirth I lost a lot of blood! I got post natal depression and hard calluses and worts started to appear on my hands and feet. I have had bouts of neck, back, arm, leg and foot pain and ongoing chest infections and pleurisy. (I have had hospital stays for infections and countless Physio) All these episodes I have had a spell of depression the month before. I have suffered miscarriages and have had episodes of severe weight loss and bleeding. I have had 2 reptured epidermal cysts removed from my left foot and found out today when my doctor finally agreed to look at me and take me serious said the "acne" on my face, neck and chest are actually cysts... I said it wasn't acne in 2013!!! After each episode I have had less mobility and strength and this has never got any better. Today I had to actually loose my temper with my doctors just to get them to agree to look into my history to see if there maybe an underling cause. I have not mentioned Lupus as I only found out about this illness myself by chance on FB this week..

Not sure what tests I need done?? Can anyone help x

6 Replies

This seems like a very difficult time for you. I would speak to your doctors about what the potential underlying causes are for your symptoms and the tests which can be done.

The miscarriages and childbirth issues make me wonder whether you have seen a gynaecologist before? The cysts on your skin also make me wonder whether you've ever seen a dermatologist? These might be your first port of call to rule out specific causes, but you and your doctor will know your medical history best.

You can always see someone else if you don't have a good professional relationship with your current doctor. It sounds like this level of relationship has already gone if you lost your temper with them badly.

In answer to your question, from your post alone Im unclear as to why you suspect lupus. However the first port of call would be blood tests (ECR, ANA, DSDNA, C3, C4 etc). If you've had ones done previously when you've felt very unwell then the results of these might be more helpful.

All the best xx


Yes I have seen a gynaecologist 8 times in 10 years with no problems ever found.. My neck, back, hip, leg pains I have had MRIs and scans and nothing has really shown up apart from degenerate disc disease but my consultant cannot see how that is causing the pain..

How I came to this conclusion was by reasearching all my medical problems and at the bottom of all of them they say lupus could be a factor?? I have found out today that my Nan had polymialga rheumatoid!!


There are 11 criteria that doctors use to see if a patient might have lupus and if you have at least 4 of them it's definitely worth having tests for lupus. The criteria are here:

The tests are listed here:

In a small number of cases the blood tests can show up as false negative so our specialists us the patient history along with the results of the blood tests to make a diagnosis.


Thanks I will show this to my doctor I have all apart from 7 and 10 and 11 have never been tested.. x


On two occasions when I have been ill my antbdy screen test has come back positive!! Is this an indicator?? And my platelet counts are all over the place


Not necessarily. If you read the section 'what does the result mean' in this article it explains it very well: