I have been suffering with what I believe are all symptoms of lupus, apart from a face rash and organ damage, for around 4 years.
My blood results showed positive for HLAB27 & ANA ELISA with a low titre rheumatoid factor.
I also suffer with psoriasis, hair loss, extreme debilitating fatigue, hair, swelling, joint pain and stiffness, dry eyes ect.
I’m having difficulty (as is the rheumatologist) as both my x-rays and my spinal MRI has come back clear. He says it is extremely difficult to diagnose anything because of this but has recommended naproxen.
Can anybody recommend a way to increase chances of a clear diagnosis, I am missing so much work I’m afraid I may lose my job, it has taken over my life for weeks and months at a time.
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Ryane96
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Hello Ryane96. I’m in the USA so I can not help you with advise on how to navigate your system of healthcare. Your clinical symptoms do reflect autoimmune disease but lupus is just one of many. Not sure what the significance of MRI or X-ray with a diagnosis of lupus. These autoimmune diseases can be tricky to diagnose. Mine took many years for my clinical symptoms to match my bloodwork. I hear your desperation and understand it. Here’s hoping a UK person has sound advice for you. Best, Titters
Hi Rayne96. I would recommend getting a second opinion, different rheumatologist. Initially they had no idea what was going on with me, so I've decided to go through private, i didn't want to wait for NHS had full blood work done and it was clear, i was diagnosed then went under the NHS care again. Prior to that they kept taking wrong blood tests no one knew what it was. My advice would be asking for more bloods or getting a second opinion. It's hard to detect lupus but I've been told the best way is to get a full blood work. Wishing you the best. I know it can be draining but you will get a diagnosis hopefully soon.
The diagnosis of SLE/lupus is quite complicated and depends on a combination of clinical history, symptoms and blood results.
The professional guidance is here (scroll to the section headed "Recommendations for clinical and serological features...") academic.oup.com/rheumatolo...
The single definitive blood result is a positive ds-DNA (double stranded DNA) antibody test. But not all SLE people have a positive ds-DNA.
My suggestion would be to keep a symptom diary for a few weeks, and ask for the bloods described in the guidance. If your rheumy is unwilling to make a diagnosis, ask them to give you a clear account of what they think your symptoms are caused by. "I don't know" may be a reasonable answer, but it's no use if it's not accompanied by a clear management plan that will move you forwards.
Good luck, and do post here again if you need to x
I'm in the same position as you! but slightly different! Been struggling with extreme fatigue, swelling and pain, joint stiffness and dry eyes, heat intolerance etc.
i was hospitalised last year for a month and they had suspected Ms but no family history and only small non descript lesions on my brain they said it was most likely Functional neuro disorder.
However new blood test this year (positive ANA and DSDNA) and now they have suggested ive most likely had lupus for a few years. I'm in the same position in terms of the fact i've got some of the symptoms for the criteria but not all and without a firm diagnosis (im having to wait to see mine, booked in march , appointment isnt until september!!) which is causing me havock as im also having a fair bit of time off due to not being able to move much from either the pain/ stiffness or fatigue!
Id agree with whisper ! start writing a diary with symptoms and times , and if you suspected any causes! it helped with me having more blood tests from my GP and im glad i did as at first they had said they were not needed!
My GP agreed I had the majority of the pointers of Lupus but won't make a.. diagnosis.Rheumatologists haven't even asked about my symptoms and blood tests are nt conclusive-can be sero-negative.Re Scans and Xrays -three have said "scan appears normal".Have the facial rash typical of lupus.i have been battling for 11 years .Hope you get a diagnosis.
There really likely are no more tests to be done other than blood tests that the rheumatologist has done. The problem is that these illnesses don’t always express themselves in a way that make diagnosis possible. The fact that the doctor is putting you on naproxen makes me think he is considering an inflammatory condition.
You are in the hardest phase because you have all the awful symptoms of fatigue and pain but can’t explain anything to your employer or family. With your positive ANA and RF, maybe your rheumatologist would be willing to say he suspects autoimmune disease.
When I was in your position many years ago, I was told it was important to watch to see how I developed. This was helpful because at least I knew how these diseases tended to work. Four years is so long. But you will hear of people here whose illnesses took a long time to diagnose. Sometimes symptoms change and sometimes bloodwork changes.
I would ask your doctor specifically what he is thinking in terms of possible diagnoses. He may not tell you specifically but he may give you his thinking.
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