My son is so unwell and we need help

[Emma73]

My son was diagnosed with myocarditis and then pericarditis in July this year. He was lethargic for a while before this happened and has had joint pains for as long as I can remember. He had an MRI of the hands and synovitis was seen in his right hand. He has Raynauds phenomenon and inflammation of his rib cage. He went into hospital for abdominal pain and had his appendix out. After the operation he had a blood pressure of 150/100 and a heart rate of 150 and his oxygen was 84%. He was transferred to ICU for two nights. He then went back to the ward and had seizure like symptoms and was not responding even to pain. He ended up back in ICU for another night. He is waiting for neurologists and an EEG. He has seen a rheumatologist and has started on prednisolone which was helping him until this episode in hospital. All his bloods came back negative to ANA and other antibodies. I am so desperate to help him as he is 19 and so depressed with feeling so unwell. Can anyone suggest anything or any avenue that may help. Do bloods have to come back positive to get a diagnosis?

[Paul_Howard Partner LUPUS UK]

Hi Emma,

Where is you son currently being seen?

If you are near London then the UCLH has a lupus clinic specifically for young people in between paediatric and adult care. Getting a referral to a centre like this will ensure he's getting seen by the people with the most experience.

Blood tests don't come back positive 100% of the time.

[Emma73 in reply to Paul_Howard]

Hi Paul unfortunately we are in Melbourne Australia. I wish we were in the UK as I am at my wits end. I would bring him to the UK if he was well enough as we emigrated to Australia from the UK.

Thank you for responding and also if blood tests don't always come back positive why do they focus so much on them?

[Sher78 in reply to Emma73]

Bloods do not have 2 come back positive. It is perfectly possible 2 have lupus (or many other autoimmune disorders) with negative bloods. Bloods do not themselves diagnose lupus, they r merely used as a 'tool' 2 identify it. I have had lupus since I was little but was only diagnosed just over 18 years ago & my ANA changes like the weather, 1 minute it's positive, the next, negative. The way they diagnose varies from place 2 place, they generally take in2 consideration the symptoms u have and if u have say for example 8 out of the 10 but negative bloods, it's a pretty safe bet there's something up.

[Paul_Howard Partner LUPUS UK in reply to Emma73]

Have you tried contacting the lupus charity in Australia?

If you go to this website and make contact with them, they may be able to advise you on the best place for your son to go - lupusnsw.org.au/

[Redtape]

Paul and Sher78 have given you excellent advice. I find blood test baffling. I know distances are vast in Australia but it is so important to get help from Lupus experts. At my physical and emotional worst I had pericarditis, inflammation of the rib cage etc and for the first time I wondered if I'd ever get better. I can understand how depressed your son must feel. That was more than 20 years ago and I've done lots of wonderful things in my life since then. Ask your son to try to stay positive. There is so much more help and knowledge out there now and lots of dedicated specialists who will do their best to get him back to health.