Hi all, I'm new to the Lupus sight but have hEDS but haven't had genetics test. Seeing a Rhuematoligist soon as well as Dr Hakim in London who've I've red great things about.
I've been having Lupus symptoms for quite a few years. I've even found in my doctors notes to discuss possibility of Lupus because of previous blood test and other symptoms.
So my question is: Can any of you who might have had the same results share your experience? Please and thank you.
I hope everyone is doing the best they can today. 🌻🌞🌼
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Ladyuponthelake
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I have hEDS. There is no genetics blood test for it. If they sent you for a test it’s because they are currently trying to find the code for hEDS.
HEDS is a connective tissue disorder so I’d say there is a good possibility they are connected, but they don’t know the dna code (s) for it so they don’t know. Hope that helps. Ps I was with dr hakims physio last weekend on training and I asked all the questions! X
It's not been a real diagnosis from a consultant. I saw someone about Sacroiliac problems in 1999 and that was mention and has been carried through ever since because I am flexible and have many other issues with body.
So there has never been a real diagnosis and just thrown into the hypermobilty pool similar to the IBS pool. I probably explained incorrectly. But yes have read there isn't a genetic test for hEDS.
My question for now is about negative Lupus test and still have Lupus symptoms. Has anyone else had a similar situation and been diagnosed with something else? Should I be researching something else?
Yes I have had negative Lupus tests for years. My dr's continue to check & request tests. My Resperologist & Rheumy have both spoke of Lupus SLE. I have a consistent Sed rate. I have a few other inflammatory markers that bounce around. Frustrating but at least they continue to explore & try to help. Body parts that have been effected, lungs, lymph glands, eyes, kidneys, plus the usual fatigue, hand discomfort, headaches & low grade fever. I hear your frustration. Good luck & take care.
I'm soon to see Rhuematologist after 18 yrs of requests. Saw one in the states but notes were lost and my symptoms have changed dramatically. I'm also paying to see one privately because I had already booked it in London. So I hope for more information.
Although dsDNA antibodies are very specific for lupus (as they are not typically seen in any other condition or in healthy population) only approximately 60% of people with SLE will test ‘positive’. Therefore if someone is positive for these antibodies, it often means they have lupus, but if they are negative it does not necessarily mean they do not have lupus. For more information, you can read our blog article on ‘getting a diagnosis of lupus’ here: lupusuk.org.uk/getting-diag...
Before attending your appointment with the rheumatologist you may like to read our blog article about 'getting the most from medical appointment's here: lupusuk.org.uk/getting-the-...
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