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...