Advice on 2nd opinion for SLE...ANA positive, ENA positive, anti RO antibodies positive in recent blood test...please ?

[25clai]

After a stint gong in and out of hospital for undiagnosed abdominal pain, procedures etc, I was referred after 6 blood tests which showed low sodium and anaemia after 6 abnormal tests referred to endo. More tests were done to "rule out other diseases". Results came back with the above. The anti dna / Ig/G was <9.8. Not sure if this is positive or negative. I was immediately referred under triage due to my many symptoms to rheumatology. I expected some explanation of results and discussion of all symptoms. Instead I got told as soon as I sat down that my tests are now negative, no auto immune problems and then all examination geared to a diagnosis of fibromyalgia . Only asked for my immediate family history,wasnt interested in the fact that autoimmune disease is rife on my mothers sideAfter much pushing, I got the Rheumy to book some tests. A lip biopsy is being performed and nerve testing. She muttered something about secondary sjorgens.

This is in direct contrast to the endo who performed the tests who rang me to say he was surprised by so many positives and the anti RO antibodies explains the multiple failed miscarriages I had years ago, and has consistently suggested SLE needs to be considered.

I asked GP how to get a second opinion . He told me I am not entitled to it unless I have medical investigations to suggest this is reasonable. Is it reasonable based on my blood findings? I have no idea if anti DNA figure is positive or negative. Apparently there was no ANA staining . I do however have rashes in mouth and genitals which never go away. Dentist says it looks like SLE. I have strange blue ulcers in mouth too. Rheumatologist just shrugged shoulders and told me to take more pain relief and see her in 3 months time. I haven't confidence in her. I tried to be referred internally at St Thomas ( I am a patient at the pain clinic ), but was told it has to be bounced back to GP . Back to square one.....I should mention I am a patient now for various problems, at East Surrey, St Thomas, Royal County and St George's . There's a lot going on for me. Is there a good connective tissue consultant at any of these hospitals , PM me if you have any relevant experience. Advice on second referral on general posts much appreciated...

[LUPUSadmin]

Hi 25clai,

You are entitled to a second opinion on the NHS. You can find more information about getting this second opinion here: nhs.uk/chq/Pages/910.aspx?C...

You could ask to be referred to University College London Hospital. The rheumatology department there has a lupus specialist.

You might be interested in reading our booklet 'The Diagnosis of Lupus' which explains a little more about how lupus is diagnosed. You can access this here: lupusuk.org.uk/wp-content/u...

George

[25clai in reply to LUPUSadmin]

Thanks, I may try UCL, however my GP surgery is reluctant due to costs to refer out of area . I have had this issue before . I am however, a patient at St Thomas, in the pain management centre, I have tried to see if they would refer me on , but that was a " no , go back to your GP". I would have thought my surgery would prefer a potential lower cost in full diagnosis, rather than the huge cost they have already had with me bouncing in and out of hospital over the past 2 years. I have the diagnosis guide and will be using it to help get a second opinion . appreciate your advice