Hi - sorry if this rambles on - have a thousand questions regarding possible Hughes Syndrome in my daughter. She was recently tested for Lupus - had miriad of symptoms including facial redness, but the only positive blood test that came back was the Lupus Anticoagulant. Her Cardiolipin IgG was 5.2 which wasn't flagged up, although St Thomas' Hospital on the internet suggests that 2-20 U/ml is a 'low positive'?
Her history is complex: years of severebody-wide pain and tingling, severe fatigue, migranes, mobility issues including sudden onset periods when her arm or leg seem to stop listening, terrible circulation, brain fog etc.
Diagnoses so far have been: Chronic Fatigue Syndrome, Fibromyalgia, Dyautonomia, Postural Orthostatic Tachycardia Syndrome, chronic hypotension, several bouts of Complex REgional Pain Syndrome and Ehler-Danlos Syndrome. She's had a burst appendix and her gall bladder removed after suffering unexplained bouts of severe pain and MONTHS of unexplained vomiting.
Her consultant at the Lupus Centre at London Bridge was surprisingly unhelpful - rang to say all results fine, then rang back and said "oops, actually one was positive - have another blood test in 12 weeks". In his follow up letter he just said that if the second test comes back positive she should take asprin - no mention of follow up.
We have realised that she actually had a positive Lupus Anticoagulant test about 6 weeks previously - GP had done and not specified the result, just said she needed to repeat it in 12 weeks.
I have so many questions - it seems like Hughes Syndrome would explain not only her symptoms but also some weirdnesses in the past, like the two times she had severe problems following canulas, when her arm swelled and was excruciatingly painful and also intermittent myositis in her arm. But we have had "eureka" moments before so don't know what to think.
Can anyone suggest whether her blood results are suggestive of Hughes Syndrome, and whether and where we should follow things up?
Also - I've seen mention of mobility issues which are a real problem for her. She has had nerve test and mri's galore. The only thing to show up was a slight possible shadow on the spinal cord but this did not change so was disregarded. How does Hughes affect mobility?
Sorry to make this so long - have had 5 years of chasing shadows trying to find answers for my beautiful 20-year old but can't give up and 'write her off' until every stone turned.
Thank you for reading this and especially if you have any ideas, suggestions or advice.