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[Burnley1234]

Still waiting for either clarification on diagnosis now been told I (have a systemic disorder) by doctor nothing else he's always waiting for direction from hospital consultants I'm under 3or4 consultants all treating me under their speciality I have bile malabsorption guttate psoriasis the pain is horrendous seizures numerous pleurisy double pneumonia my white bloods elevated for ten years ruptured ear drum osteoarthritis since birth,severe itching in eyes many mouth ulcers severe burning,sometimes severe water,flooding in mouth don't know how to explain this,severe seizures and blanks or mini ones,severe short term memory loss I feel I'm just existing in suicidal it's driving me insane an I don't know how to ask for referral to hospital that knows what to do and diagnose,I had ten years ago app with Reims who said all the above was quote irrelevant,cos my test result was double negative therefore not lupus or systemic now ten years on I'm at my wits end so if anyone can advise I would be grateful thanks

[eekt]

Sorry to hear of your horrendous experience, Burnley1234. There was a NICE guideline for assessing SLE published in 2017 (academic.oup.com/rheumatolo... and if you have a look at Table 5 on Page 10 of the PDF, you might recognise a lot of your symptoms.

Take that table along to your GP and ask for a Rheumy referral, and for the blood tests listed under 'Immunologic Criteria' - don't know if a GP can order them all. If just one of those is positive, that's you well on your way to SLE diagnosis, BUT many autoimmune conditions can be negative in all bloods.

As you'll see from Table 5, clinical symptoms are NOT irrelevant. All the best xxx