I am a 62 year old female and am a paediatric physiotherapist by profession and, up until my late 40s, was very active and fit.
About fifteen years ago I had an incident with a screamingly bad headache in the night. I took pain killers and went back to sleep. The next morning I felt strange on my right side, but my husband said I looked fine. I went to work, but my balance and coordination were poor.
On admission to hospital, nothing was found, although my right side has never felt quite right since. With hindsight, the doctors think I had a clot in my brain stem. I was working three part time jobs at the time, and was advised to give one up, which I did. I continued working at a school for children with moderate learning difficulties. I always felt fatigued, and had joint and muscle pains, but no one knew why, and all my test results were negative.
I just thought it was working and having a family. My balance and coordination were still not very good, and some days I found my memory was poor.
In June 2004, aged 54, the top of my right first finger looked like it had an infection. I ignored it until a couple of days later it started spreading. I went to the minor injuries unit, and was horrified to be told that it was a blood clot. A trip to casualty ensued, and a hospital stay on clot busting drugs.
Tests came back showing that I had a positive lupus anticoagulant, which is one of the tests for Hughes syndrome. I was put on the warfarin at a low dose, but it did not improve my symptoms. I was gradually getting what can only be described as 'brain fog', loss of memory, and terrible fatigue. Things on the family front were difficult at this time, and I found taking warfarin, the regular tests, and the risk of bleeding too much to deal with. My consultant let me come off the medication, on the proviso that I went straight back on if I had any more symptoms of a stroke or a clot.
I continued to work but it was a struggle. I was unable to process or write reports, could not remember things from day to day, could not add up and could not think how to set targets. I had problems on public transport and driving. I found it hard to remember where I was going, why and how to get there. When I was talking or writing about a child patient I could not remember them. I had to get my husband to add up my bills each month. I said to him, amid the tears, either I am going mad, or I have early onset Alzheimers. The fatigue was also terrible. I used to have to lie on the floor between treating the children, and often struggled to walk home. No one could help, although the doctors made sympathetic noises.
Finally, in July 2005, I made the decision to quit work, as it was not fair to anyone. Being self employed, there was no fall back or finances available, so the stress didn't help. I could not physically continue sports such as tennis etc, and sometimes found it hard even to carry on a conversation. No one said Alzheimers, but I was very frightened and got depressed. I lost faith in myself. Counselling helped. My family were great, but it didn't change the situation.
In September 2006, I started getting visual symptoms, and returned to my consultant, who insisted I started warfarin again. Each person on warfarin has a personal target known as INR. This is a measure of the thickness of the blood. Generally targets are quite low, because warfarin in excess can cause bleeding. When a person first starts warfarin they are often given heparin as well, which acts more quickly to raise blood levels. I went high, up to 4, by accident, and it was like a miracle. I woke up one morning feeling normal again. The symptoms of brain fog, fatigue, memory loss, and joint and muscle pains were really reduced. My consultant agreed that I could have a higher target of 4, which is what I now try to achieve.
But it is still a roller coaster ride trying to manage it. It can change from day to day, dependent on things like stress levels, diet, sleep, exercise, and all different things. The hardest thing I find to cope with is the unpredictability. Some days my mind is as sharp as a razor, and other days it is like mush for no apparent reason. But at least now I am learning to pace myself and watch my diet, I have days when I feel normal again. These days are getting more frequent, and it was such a relief when I discovered that I did not have Altzheimers.
The tests for Hughes syndrome are very simple and inexpensive. Three blood tests will show the presence of the antibodies, and it can be requested in the first instance by a GP. I am so glad that I had a young registrar who knew what to test for, and feel very blessed that I can live a relatively normal life.
I hope my story will help others who may be showing these symptoms at a relatively young age. Please go and be tested, because if you have Hughes syndrome you can really be helped.