PT 20210A
Turner's Syndrome














It was suggested that some details of my background and personal history of my life may be of interest in helping others who suffer from Anti-Phospholipid Syndrome or their relatives. To this end I have put pen to paper with a short history of my background and my life leading to my diagnosis of APS.

I was born in 1950 in an area of London that has long since disappeared; this was a triangle of Victorian streets called Notting Dale, situated in a part of London now called West Kensington that sat between Holland Park, Shepherds Bush and Wormwood Scrubs. In the early 50’s the area was considered to be slum housing with many prefabricated buildings. These had been erected as emergency housing after the second world war, to replace the old Victorian two-up two-down houses that had been destroyed by bombs

Sickness and disease would spread quickly through such areas due to the sheer numbers of people living in such a close community with poor housing conditions. One such disease was Polio, and in 1953 there was a major epidemic in this part of London, and I was one of the unlucky children to be struck down with this potentially lethal disease. There was no vaccine, no treatment available for such large numbers, the hospitals were full and only those so bad that they required placing inside an Iron Lung were admitted.

My mother refused to allow me to become another statistic, and forcibly exercised my wasting legs. You can only imagine the determination of a mother to force a child to push against hands holding the legs bent, when all the time she must have known that the pain would be unbearable.

This determination and the will to not let me die paid off and the hourly massage (every hour day and night for months) and forced exercise stopped the wasting of the muscle allowing the remaining nerves to take over the functions of those that had been depleted by this terrible disease. This in turn allowed the muscles to hold the bones in place and helped to correct any further deterioration of the bones. Thanks to my mothers strong will and immense determination I survived with minor deformities of the right hip, leg and ankle. These minor problems proved to be of little consequence in later life, as they were almost unnoticeable.

In 1954 I started school and the teachers were worried that there was something wrong with me as they could not get me to write, and when I did the words were unrecognisable. After a few months of continually trying to get me to write words, one of the teachers noticed that I had used all the correct letters, but in the wrong order. The quick explanation was that the polio had affected the brain and I would not be capable of learning. Again My mother would not accept this reason as I already proved that I could learn as I could dismantle my tricycle without help and could put it all back together with only a spanner, not the actions of a child of five with brain damage. After prolonged discussions with doctors and school officials the decision was made to check my vision as part of a complete health check. It turned out that I was almost blind in the left eye with a congenital cataract and that my brain was misinterpreting what I was seeing into a mirror image. Holding my written work in front of a mirror confirmed this as the words could then be read perfectly. With the simple addition of a pair of spectacles to make the vision in the right eye a little better and more perseverance by the teachers I learnt to write from left to right and without the mirroring of the letters.

Moving on to 1957 I fell ill with Scarlet Fever, this is a disease that is virtually extinct and is totally treatable today, but which was still a major killer in 1957. The treatment was to isolate the patient and ‘hope’. This was at a time when there was an epidemic, all hospitals that had isolation wards were full and the health authorities took over disused airfields, army barracks and empty asylums as isolation areas. I was placed in a makeshift room inside an RAF aircraft hanger at Perivale in Middlesex. This facility had been run down and empty since the end of the war, and was not the most hospitable of places to put sick, scared and lonely children into rooms that contained a bed and a wooden box for their belongings. The belongings that were allowed were pyjamas, slippers and dressing gown, along with a few toys that were dispensable. The reason for the small amount of dispensable personal belongings was the fact that they were burnt if you survived or not to try to contain the disease. You were literally placed in the room, fed, cleaned and observed. If you survived you went home if not you were buried. Again I was one of the lucky ones; OK I looked like a skeleton when I came home, but at least I came home many did not.

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Over the next 20 years I had many of the usual childhood diseases, including the doctors diagnosing measles every six to eight weeks during puberty, even though it was generally understood that you could only get it once. Nose bleeds, Migraines and the odd rash seemed to be normal and recurred on what seems now to be a weekly basis. These were so much a normal part of my life that I accepted them and felt that I was in an overall fit and healthy condition. I thought nothing of cycling 100 miles in a morning; I visited Gym’s and swam a lot.

Quick resume of non-health related life events:

1967 Met the girl who I was going to spend the rest of my life with.

1969 Jen and I got married

1972 First child born, a lovely daughter whom we named Rachel

1974 Second child born, a boy whom we called Stuart

1985 noticed a lump in the left testicle, after visiting the doctor and being man-handled I was told that this was nothing to worry about, but I should keep a check on it.

1986 visited the doctor for a swelling in the stomach, where the waistline had increased by 2.5 inches in a couple of months. This may not seem a lot, but you have to remember that I did weight training, swimming and daily cycling, so any increase this rapid should ring alarm bells. An overweight, young, cigarette smoking doctor advised that this was perfectly normal as it was ‘middle-age spread’. After hurling a little abuse at him about his own expanse of stomach making it impossible for him to sit at his desk and be able to reach his pen to write, I was removed from his list and referred to a partner who was a little more concerned with the rapid increase in waistline. It turned out to be a build up of gasses from the body’s reaction to the carcinoma in my testicle. Within 21 days I was admitted to hospital for a biopsy and the carcinoma was removed. As an aside the first doctor is now the senior partner in the surgery and the better one has moved on to bigger and better things.

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Up to 1995 very little happened in my life that was medically memorable; I did suffer back pain on exertion, which I used as a good excuse to get out of gardening. I still had regular nosebleeds and the strange rash that would appear whenever I felt ill or run down.

1995 I started experiencing acute searing head pains along the top of the skull that lasted approximately 5 to 7 seconds these usually appeared when walking at a leisurely pace and at times when I feel that I was not under any form of stress. These pains occurred at approximately 5 to 6 weekly intervals and as they left no other symptoms and did not last I felt it unnecessary to seek medical advice.

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1996 I experienced a severe head pain and lost sight in both eyes (my left eye has a cataract and gives me limited vision) as this condition lasted for over 20 minutes and only limited vision returned I visited Trowbridge Casualty Department. My eyesight was tested and the Sister took some details before sending me on to RUH Bath where I visited A&E, I was assessed before seeing an Ophthalmologist. By this time my vision was almost back to normal and the Ophthalmologist concluded that this was just an ocular migraine and was nothing to worry about.

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June 2001 while at work I experienced a sharp pain in the right side of the head, blurred distorted vision in the right eye, sounds were muffled and my speech became slurred. I stopped work, walked slowly to a nearby shop bought a bar of chocolate and a mineral water and sat in a park for about one hour before driving home.

I soon realised that I lost some movement in the right shoulder (loss of rotation). As I was receiving treatment for joint pains at The Minerals Hospital this loss of movement was associated with the diagnosis there of Psoriatic Arthritis.

November 2001 this attack started with a fast pulse, blurred distorted vision in right eye, stiff neck with no noticeable head pain. I became disorientated, my speech became slurred, then incoherent and then non-existent (Aphasia) and I was seriously bewildered and did not understand the meaning of words that I usually took for granted.

Example: "Put on your fleece", I have a number of fleece jackets and know exactly what one is, but at the time I just stood in total bewilderment looking for something that looked as though it could be called a 'Fleece'.

I was taken to Trowbridge casualty where Dr. Jones examined me; I was given an ECG and advised to see my GP. Although I only had new glasses a few weeks earlier there has been a rapid change in my short-range vision making it difficult to read.

Timescale of symptoms

 Tingling of left fingers (one hour)

 Numbness of lower lip (one hour)

 Stiff neck (lasted for weeks)

 Blurred vision -printed text moving to left and disappearing (forty minutes)

 Speech loss (total for 20 minutes and impaired for 4 months, only getting better with practice)

 Confusion (30 minutes)

 Short term memory problems -forget words, names and when I stop to think of the word I then forget what I was talking about (still have this problem and have taken to using memory jog cards)

 Loss of strength left side more than right

Treatment starts

This was the event that confirmed to my GP that there was a problem that required investigation. Her first thought was a TIA, for which she made me an appointment with a neurologist. I received an appointment and duly went to see the specialist who was to investigate the problem. After explaining the symptoms and answering a few questions on the feelings and visual interaction of the event. He decided that this was not neurological and that there was no need for a repeat appointment. He based this opinion on the fact that all the physical events, speech loss, numbness of left fingers and numb lips were consistent with reduced blood supply to left side of the brain, and that as the visual impairment was on the right then this did not agree with the left side diagnosis, and therefore did not exist.

Not sure if I should have lied about the left side vision being impaired to fit his expectations. I am virtually blind in the left eye and the vision impairment I got could well have been left side vision impairment being misunderstood by a brain that was not used to ‘seeing’.

December 2001 this attack started with a mild headache, which escalated during the day, a stiff neck, which started about lunchtime, and by the early evening I had a raised pulse rate, numbness of the lower lip and a strong feeling of anxiety.

I visited Dr. Kneebone the next morning where I presented the following symptoms:

  • Sunday 16th December
  • Mild headache all day
  • Stiff neck all day
  • Numbness of lower lip all day
  • Stiffness in right fingers (about one hour) Raised pulse rate (78 at rest)
  • Strong feeling of Anxiety (about 90 minutes)
  • Bewilderment (about 20 minutes)


  • Monday 17th December
  • Strong headache
  • Stiff neck
  • Raised pulse rate (76 at rest)
  • Pulse at 11:15 = 60 bpm which is close to normal.

My GP was not impressed with the previous lack of care and treatment by the Neurologist, and insisted that I have a second appointment and tests to prove his snap decision that there was no neurological problem. At this consultation the neurologist ordered blood tests that included Prothrombin time, Russell viper venom and immunoglobulin tests. The rest is history as they were the beginning of a number of tests to prove APS, Protein C abnormality and Prothrombin G20210A mutation.

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 March 2002 this attack started with a fast pulse, blurred and distorted vision in right eye, minor head pain. I became slightly disorientated, but recovered within 30 minutes of relaxation. My left arm has become slow and will fall to my side if I do not concentrate on it. I have started exercises to force this arm to react as quickly as the right one. My left eye has a distinct droop in the muscle at the left of the eyebrow.

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February 2003 this attack started with a severe headache, which escalated during the next two day’s, a stiff neck, finger tingling and numbness of lower lip started early on the Saturday morning. Saturday at 11.30 am severe head pain heralds start of a TIA. I now know what to expect, no panic, relax and control actions and reactions and sit it out.


Ring doctor. Chances are the duty doctor will have no knowledge of disorder let alone the symptoms. Decided this option would be futile.

Call Ambulance. Using last three TIA's as a guide decided to not follow this option as the time to A&E is about the same as noticeable effects, can't face long wait and more disbelieving doctors.

17.30 increased dose of Warfarin to 6 mg (1 mg extra) and advised Dr Hales of this fact on next visit to the surgery.

April 2003 his TIA started with pains during the day in my right thigh, right calf and left forearm, all of which got progressively more irritating during the day. These were then accompanied by the severe head pains which again lasted for seconds but became more frequent as the day progressed. During the early evening I had a fast pulse, blurred and distorted vision in right eye, minor headache to accompany the severe intermittent pains and I became slightly disorientated and aphasic. A full account of the hospital visits follows:

20th April 2003 20:30 approx

Visited the A&E department at Trowbridge Hospital, where I presented Doctor Jones with the following. Sharp, severe head pains (not a headache) followed immediately with numbness of the lips, tingling in left hand, visual disturbance, aphasia and confusion.


Doctor Jones looked at my eyes asked a few questions and took a look at the blood pressure and temperature results. Dr Jones misread part of my information pack that I carry for emergencies and  ignored the APS and Prothrombin G20210A  blood disorders going on to use his own experience of the symptoms presented for diagnostic purposes.

Instructions to family members

Asked a few minor questions on smoking, drinking and the build-up to the moment the problem occurred. The Doctor advised that with an INR of above 3 the blood would not clot. This was a categorical statement and he made it clear that this was not open to discussion.




My Wife disputed this diagnosis because I was aphasic, bewildered and had suffered a loss of cognition all of which are not concurrent with Migraine. As there was a proven clotting disorder, she asked for a review of facts to check this diagnosis

Doctor Jones seemed to take exception at being questioned on his diagnosis saying 'I am not going to argue that here' and did not seem to understand the importance of the Prothrombin abnormality in the blood coagulation process. At this point, he advised us (pointedly) that he diagnosed Migraine and he was not going to argue. If we disagreed we should make our way to Bath Royal United Hospital and (in his words) 'let the experts have a look'. This seemed to be the only sensible option open to us.

Not the best of treatment from a caring medical professional, but perhaps we expected too much from a mere General Practitioner. He could, at least, have read the information pack that we presented to him on entering his department. If he was still unsure of the disorder, he could have rung the 24-hour advice line number that was clearly shown on the front of the pack and again on the rear.

20th April 2003 22:00

Visited the A&E department at Bath Royal United Hospital, where I presented the following:

Sharp, severe head pains (not a headache) followed immediately with numbness of the lips, tingling in left hand, visual disturbance and aphasia. In the 40 minute journey the state of confusion had subsided.


A full study of the current symptoms and the added diagnostics of blood tests were ordered. I remained in the emergency observation area until the doctors on duty could investigate the cause and effect of both APS and Prothrombin G20210A mutation on the clotting process. After receiving the INR result of 3.8 from the laboratory, and now having a better understanding of the blood disorders, they concluded these were 'classic' TIA' symptoms.

Instructions to family members

Advised of actions at all times, listened to additional information supplied and acted with great professionalism.


Classic symptoms of a TIA, as my INR was 3.8 they concluded this was not high enough to give me adequate protection.


2 mg Warfarin given immediately (long term increase due to the 72-hour half-life) and I was then advised to increase my normal daily dose. For immediate protection, I was given a 4 mg injection of a branded subcutaneous Heparin solution. I was admitted  to a ward and kept overnight for observation. After a follow up visit by a team of doctors I was discharged at 10:00 on 21st April.

22nd April 2003 10:50

Normal weekly blood test carried out, which showed an INR of 4.8 as the Heparin was still in my blood.

23rd April 2003 09:30

Visited my GP to advise of the hospitalisation and that the Heparin injection may be the reason for the high INR. Dr Hales was very understanding of my concerns that clotting could still occur at an INR of 3.8 and has agreed to maintain my Warfarin levels at 6 mg daily to aim for an INR of 4.0 plus.

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