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
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.
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
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.
"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
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
- Bewilderment (about 20 minutes)
- 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
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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.
Chances are the duty doctor will have no knowledge of disorder let alone the
symptoms. Decided this option would be futile.
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.
dose of Warfarin to 6 mg (1 mg extra) and advised Dr Hales of this fact on next
visit to the surgery.
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
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
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
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.
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
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
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
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
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
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