Lynn was taken to Epsom General Hospital in 2011, when she suffered a stroke. They were initially unable to offer her a bed at the hospital as there was a flu epidemic at the time. Doctors originally thought Lynn had a migraine as she suffered from Hemicrania Continua, a TCA (Trigeminal Autonomic Cephalagia) which is a chronic daily headache disorder. However, the specialist who had treated Lynn for that condition for twelve years, convinced the hospital staff that it could have not been a migraine, but a possible stroke, and as a result she was taken to a private ward and given a bed. When the stroke was confirmed, Lynn was moved to Ashtead Hospital the next day. She remained in the hospital for three weeks while she recovered, undergoing numerous tests to find the cause. During this time, her specialist did a test for ‘sticky blood’, otherwise known as antiphospholipid syndrome (APS) or Hughes Syndrome. The result came back negative. For the next six months, Lynn continued to look for explanations and theories that could explain the cause of her stroke. Having not heard anything different from the hospital for almost six months, Lynn started doing her own investigations, all results suggesting that she had Hughes Syndrome.
While her test result had come back negative, Lynn found that there were a number of symptoms she had suffered over the course of her life that seemed to fit with this diagnosis:
After six months of warfarin treatment, the anticoagulation stopped but the symptoms slowly started to reappear: balance, cognitive and speech difficulties, fatigue, circulation issues, pressure, headaches and other neurological symptoms that were dismissed or put down to medication side effects. While conducting her own research, Lynn discovered that these symptoms and her associated conditions were all linked with Hughes Syndrome, especially Sjogrens Syndrome and Autoimmune Thyroid Disease.
At a follow-up appointment, Lynn asked her specialist about his thoughts on her having Hughes Syndrome. He was also highly suspicious that this could explain the cause of her stroke and referred Lynn to Professor Graham Hughes at London Bridge Hospital.
Professor Hughes listened intently to Lynn’s story before examining her. He was immediately confident in saying she had both Hughes and Sjogrens Syndrome (the two commonly occur together). On returning for a follow-up appointment two weeks later, having run further blood tests, this was confirmed for Lynn, and Professor Hughes put her on trial of LMW Heparin (Fragmin).
Since receiving the correct diagnosis, Lynn was more certain about which of her symptoms were linked to Hughes. Unlike people with Hughes who take Warfarin, Lynn injected herself with Fragmin everyday, she didn’t need to get her INR levels checked regularly or alter her diet. Her symptoms were mostly under control and while she did sometimes suffer flare-ups, her GP had instructions from Professor Hughes to prescribe her a small dose of steroids.
Lynn felt that sero-negative Hughes Syndrome can be a very difficult condition to diagnose and treat, resulting in the need for more awareness so that the diagnosis time can be brought down and needless strokes suffered, as in her case.
Lynn was very happy with the treatment she has received from Professor Hughes. She felt that without his diagnosis her life would have had a different outcome. Lynn also praised Professor Hughes efficiency in responding to her queries. While Lynn admits she has a healthy respect for the disease, she refuses to allow it take over her life. She now volunteers with the Hughes Syndrome Foundation Health Unlocked Forum so she is able to help other sufferers, especially those who have just been diagnosed.
If you’ve experience similar symptoms, and would like to speak to a specialist please contact us via email on Gpliaisonlbh@hcahealthcare.co.uk, or call +44 (0)20 7234 2009 to book an appointment.
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