I was an extremely fit and active 18 year old when I was admitted to hospital with a suspected pulmonary embolism (PE). After a week on heparin injections I was sent home, being told that the symptoms were inconclusive and it was probably pleurisy. I was given some painkillers and no further tests were run. I was keen to get on with my A-levels and so didn't ask any more questions.
My medical history at this point showed I had suffered badly from Glandular Fever at 13, I had been diagnosed with Reynaud's and had a history of skin rashes in hot weather but these things were not looked in to.
So I went off to University only to risk being thrown out because I started fainting all the time. Sometimes I would pass out several times a week and the rest of the time I suffered from terrible dizziness. The concussions I was getting were sometimes quite bad and the University was worried about insurance and health and safety issues with me being there.
I was sent to a cardiologist who put me on different sorts of heart medication, including beta blockers which seemed bizarre for a young woman with low blood pressure. All of the medications I tried made me terribly unwell. One doctor even wanted to put a pace maker in, but luckily my parents were very against this as there didn't seem to be any results that showed there was anything wrong with my heart.
I continued to get worse, still fainting and suffering severe dizziness, headaches and joint pain. I was sent to a neurologist who said (and I quote) "I'm tired of seeing these silly girls with neurotic mothers who are probably just anemic and need some red meat".
Needless to say I didn't go back to see him.
I managed somehow to graduate University but was struggling. I was getting desperate and did some research on a doctor that was running trials on patients with fainting symptoms and I managed to get referred to him.
I was admitted to the National Hospital for Neurology for a week and they ran a multitude of tests which were all inconclusive. They decided it could be a type of Vasovagal Syncope or vertigo and tried some more medication which once again made me sick.
I was struggling with recurrent pleurisy which left me out of action for sometimes months at a time. It was hard to maintain jobs and relationships, and even friends get bored after a while of your excuses. Luckily I have a close family and was able to rely on them, but not ideal as a young woman when all your peers are setting out into the world.
During a very bad pleurisy episode I was taken to A&E and a young student doctor looked at my chart and asked if I'd been tested for lupus which was something I'd never heard of. Tests were set in motion which came back positive and I was then referred to a Rheumatologist who started me on new medication.
Although the fainting stopped and my blood pressure seemed to improve, my other symptoms were unchanged. This was obviously disappointing and I went back to the Rheumatologist several times complaining of terrible chest pains and shortness of breath. Not at any point during this did he order any scans or x-rays, and even told me that I was exaggerating and my chest pains were panic attacks. Once again I was referred to as a 'silly girl'.
I went on to suffer a mini stroke which was terrifying. I began to lose the feeling in the right side of my face, arm and right side of body. Luckily I was rushed to hospital and put on heparin and within a matter of days had regained the use of my right side and suffered no lasting damage.
Even after this no further tests were run and I was determined that things couldn't stay the same.
My family researched other hospitals and found that St Thomas' Hospital in London had a Lupus Clinic. I had to fight my local Primary Care Trust to get a referral and was turned down twice before they agreed to let me be seen in London. By the time my referral came through I was suffering so badly from chest pain and shortness of breath, I couldn't climb a flight of stairs. My joints were agony and my dizziness was so bad every day was a battle.
The doctor at St Thomas' took one look at me, called the nurse for a wheelchair and took me to the emergency room himself. They ran a VQ scan and discovered a mass of multiple PEs. The doctor told me he's never seen such large clots on a patient's scan that was still alive, a terrifying thing to hear.
They ran blood tests and I was diagnosed with high positive Hughes/antiphospholipid syndrome.
Unfortunately the delay in diagnosis has left me with lung problems that will always be a battle. It's frustrating to think that this could have been avoided with a simple blood test at 18 or if any of the doctors that treated me over that seven year period had picked up on my symptoms.
Since my diagnosis I have rebuilt my life and manage my symptoms as well as I can. Medications such as warfarin and steroids have made a substantial difference as have the fantastic doctors at St Thomas' Hospital.
Meeting other patients through the Hughes Syndrome Foundation has also played a huge part in helping me come to terms with and understand my condition.