Suffering with every symptom of ASP listed but negative test results

[PepperT]

Have now got the test results for hughes syndrome back and all show negative, I have an appointment with a rheumatologist next week so would like suggestions on my next course of action, do I suggest the possibility of being seronegative or just wait and see what he says?

[MaryF Administrator]

Hi there, it is always good to keep an open mind as of course symptoms from conditions can over lap. However there is no harm to be done by politely handing this paper over as a starting point: ard.bmj.com/content/62/12/1... and this one: ncbi.nlm.nih.gov/pubmed/235... also this further reading: sciencedirect.com/science/a...

Our actual website needs to carry more of this really, as so many people, including members on here, have had this diagnosis, but had to go through some very serious incidents before being taken seriously. Myself included, and my children. Luckily there are some experts out there who do actually keep up with medical reading. As professor Hughes himself often quotes, it is the tests failing the patients rather than the patients failing the tests, and plenty was said about this at our last Patient's Day. Mary F x

[Jade]

Pepper, sadly it can be a long road to diagnosis and treatment. Some even gave positive tests and still struggle with getting treatment.

Many on here are seronegative but Prof Hughes says docs need to listen to the patient as they are telling them the diagnosis.

Good luck with the Rheumy maybe ask for tests to be repeated in a few weeks.

Can I add my son tested negative with the tests the GPs did but seeing Prof Hughes and getting more detailed tests he tested positive.

[momtomany]

I just wanted to chime in and add that you need to obtain copies of your bloodwork results. I was also told that I tested negative (following a TIA) and the neurologists had actually failed to give me the proper tests. My GP went above and beyond, and researched the proper tests which led to my diagnosis. Make sure you were tested for lupus anticoagulant, anticardiolipin/antiphospholipid antibodies, and beta2 glycoprotein, as any one of these indicates positive results.