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My Story
I was born in 1950 in an area of London called West Kensington, sickness and disease would spread quickly through major cities due to the sheer numbers of people living in such a close community. 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. 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. 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. 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. 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:
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 Antiphospholipid Syndrome (APS or APLS), Protein C abnormality and Prothrombin G20210A mutation. 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. 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. Options: 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. TreatmentDoctor 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 Antiphospholipid Syndrome (APS or APLS) 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. Diagnosis Migraine. Resolution 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. Treatment 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 Antiphospholipid Syndrome (APS or APLS) 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. Diagnosis Classic symptoms of a TIA, as my INR was 3.8 they concluded this was not high enough to give me adequate protection. Resolution 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. 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. 27th May 2003 07:30 Awoke feeling lethargic and with poor vision, I live opposite a sign for the local college, on good days I can read four different sized fonts on the sign on a bad day I can read only the largest. This day I could not focus on any of the text. I made breakfast and noticed that my hand and wrist pain in the right hand were worse than normal and that my left side reactions were slower than normal. On speaking to my wife she noticed that my conversation was slower than usual, and that I was getting ‘stuck’ on more words and that I seemed to be more ‘forgetful’. 23rd July 2003 09:30 Awoke very late this morning feeling lethargic and with poor vision and noticed exactly the same symptoms as in July and on speaking to my wife she noticed that my conversation was again slower than usual, and that I was getting ‘stuck’ on more words and that I seemed to be more ‘forgetful’. These do seem to get better again over four to five days, but the forgetfulness stays worse. 14th September 2003 23:30 Pain in left arm when lying on it similar to, but much stronger, to the normal leg muscle pains. The exact point is in the joint of the Bicep, tricep and deltoid muscles, and on a scale of 0 to 10 (10 being the most painful) I would place this as a 7. There was also an intermittent head pain about 2” in front of, and 1” higher than, the left ear and a distinct swelling of the Carotid artery. 15th September 2003 09:00 Awoke feeling slow and lethargic with a dull headache in the same point that the intermittent pains had effected at night, hand and joint pains are worse than usual (I would place them at 8 on the 0 to 10 scale). Simple finger/nose test on both hands shows a distinct deterioration of the right coordination. Hand/palm flip test shows only a slight slowing of the right sided reactions. 26th September 2003 08:00 I awoke with a severe head pain in the left side of the head, just above and in front of the ear. This woke me from sleep, and subsided within 2 seconds to a headache, which if put on a scale of 0 to 10(with the severe pain being 10) was about a 4. 13th October 2003 19:00 The headache referred to above is still with me, and it has been continuous since the outset (17 days). If it is still here by Wednesday morning, I will try to get into the surgery to see Dr Hales on Thursday or Friday. 24th October 2003 14:50 I attended an Independent Medical Examination to be assessed on my capability to work, by a medical examiner. The examination consisted of a simple question and answer interview where the questions were designed for simple yes/no answers, not allowing for explanation or clarification. The assessing examiner (Dr. Martyn Peel) intimated that he had read my questionnaire form, but added that he had not had time to read the additional pages that I had added as requested in the form. He remarked at one point that he knew all about Antiphospholipid Syndrome (APS or APLS), and the tone was monotonous,leaving me unable to ascertain if this was a genuine remark or was meant as sarcasm. Asked by Dr. Martyn Peel to perform a few small tests, which consisted of:
That was about all this examination consisted of, no stress tests, no calculation of fatigue, and no testing of memory or cognition. The report completed by Dr Martyn Peel, and my comments that I have submitted for an appeal can be seen here. Medical Services (for whom Dr. Peel carried out the IME) has replied to my complaint that this form bears no resemblence to the actual interview, nor has a physical examination taken place by telling me that a Dr. Kaiper-Jones (their Customer Relations Medical Adviser) has looked at the examination documents and has advised that the information contained within the report is medically reasonable and appropriately justified. Perhaps it is only me who can see some distinct discrepencies, some obvious contradictions and the poor use of English language where they use a double negative in many replies. With the risk of legal action I would call them illiterate, inadequate and iresponsible Morons, so I will not use that phrase. Please note for legal purposes I was just commenting that I WOULD use this term if I were not threatened with legal action. 29th October 2003 08:00 The headache referred to above is still with me, I did not manage to see the doctor last week. I awoke this morning feeling lethargic, with poor vision and noticed exactly the same symptoms as in July. These are becoming common and seem to be small TIA’s that occur during the night. I will definitely go to see the doctor this week. 31st October 2003 08:00 Visited the doctor this morning and mentioned the headache and early morning problems. Doctor Hales used the words TIA’s when describing what was causing the morning problems, which confirmed my worst fears. The AP antibodies are still causing damage and clots even at an INR of 4.00 plus. Doctor Hales formed no conclusion to the headache, but as many other Antiphospholipid Syndrome (APS or APLS) patients have continual headache I willjust have to put up with it. Got some creams for my nose, and for the fungal infection. 11th November 2003 09:00 Jen and I took ourselves off to London, and not feeling able to cope with the traffic I parked at Heathrow (London Heathrow Airport), took a train to Waterloo and walked from the station to the hospital. Not being able to cope with stress and dreading being late for an appointment I ended up getting there 90 minutes early, and decided to have a restful cup of coffee in Toms Cafe in the hospital building. This proved a catastrophe as there seemed to be thousands of people moving in, out and all around the cafe, the noise (to me) seemed to be continual and I found it hard to understand anything Jen was saying to me as we sat there. We decided to give up the coffee and go round to the Louise Coote Lupus Centre and wait there. The Centre was like an oasis of calm in the sea of confusion that I felt in my head. While Jen and I relaxed and waited for the appointed time to arrive one of the staff took my blood pressure and weighed me. It was no surprise that my blood pressure was up, even after the relaxing wait in the centre, as I really could not cope with the hustle and bustle of the main hospital building. The reason I had gone to St Thomas Hospital was to have the following questions answered by the professionals:
Why have other doctors said they don't ‘think’ I have Lupus without testing for
it? A doctor arrived sniffing and mentioning to the staff there that she had a bad cold, and I turned to Jen saying "I bet that is my doctor, just my luck I will go home feeling worse having caught a cold". This same doctor came back out to the waiting area and called my name, I just knew that would happen. This doctor asked some simple questions, checked a few pertinent facts then asked why, as I was already being treated, I had asked to be referred to her clinic. I gave a slow and accurate account of the events that had led me to my request, and she made careful notes, clarified points and gave useful information to parts that I had not fully understood. All-in-all a very good rapport built up and I felt that at last I had a doctor I could trust, feel comfortable with and most importantly one who knew more about Antiphospholipid Syndrome (APS or APLS) than anyone I had ever met. The outcome is that further blood tests are being done, an echocardiogram and the first MRI scan are both booked in to find out what damage there is and why I am still deteriorating. Regular MRI scans are to be used to monitor the damage, I can have Heparin at home for emergencies and I have been given something (temporarily) for the headache, for which treatment will be given when they find what else I have that may be causing it. A really good day out for both Jen and I, after which we both felt more informed, more relaxed and confident in the future treatment from this wonderful doctor (even if she does think I may have Lupus). The doctor’s name was Dr. Marie Cuadrado, a name that I will definitely not forget due to her very good treatment, understanding and explanations. 19th November 2003 08:30 A few weeks ago I had to attend an IME, at which I was truthful and cooperative, used body language to help the examiner to feel that i was being open and honest (all things they are trained to look for). On Wednesday of this week I received a letter telling me that I was fit to work and all benefits would cease from 17th November. I hastily took myself off to the offices of the Department of Works and Pensions to get a copy of the doctors report and to complete an appeal form. Easy enough (or so it sounds), but quite a long afternoon sitting and waiting, as it seems to take them 15 minutes just to take one photocopy of one page. God help them if they had to hurry,I finally got home and spent the whole evening reading and trying to work out the reality from the fiction in the IME report, finally getting to bed at around 11:30. This was a stressful day, and on checking my INR in the late afternoon it had risen to 5.8, at which time I had to decide on the days dose, and i reduced it by 2.5 mg. 20th November 2003 08:30 The next morning I rose, wandered off to the toilet (as usual), to be confronted by this deep red stream of urine. Absolute panic set in as this looked like pure blood and seemed never ending. I don't mind blood as long as it is someone else's, and not mine. Needless to say after a few minutes of trying to come to terms with this and to decide what to do I felt quite unwell, came out in a sweat and had to open a window to try to get some fresh air. Jen came into the room at this point took one look at my very white face, listened to my description of the colour of my urine and called the ambulance service. 15 minutes later an ambulance arrived with a 2-man paramedic crew, who took details, assessed my condition(mostly shock), and discussed the options with Jen and me. Their options were to take me to the local hospital to be seen by a GP from one of the local surgeries (this could have been any of the GP s in the area who happened to be on call), as it is a small hospital, take me to my GP's surgery and speak to the one GP who has knowledge of the syndrome or take me to the Royal United Hospital in Bath. After visiting my GP they were told that I knew more than the GP and as I had called an ambulance there was nothing extra she could advise and told them to take me to a major hospital. I arrived at the hospital, fully conscious, and looking quite well, but the ambulance crew (who had been very interested in Antiphospholipid Syndrome (APS or APLS) and had asked a lot of questions on the way) 'rushed' me in on the stretcher from the ambulance as an 'emergency' giving the Antiphospholipid Syndrome (APS or APLS)er a bit of a dramatic entrance, to ensure a quick assessment. They were really great pair of paramedics, and I will be writing to their ambulance centre giving them some praise. I was assessed and a doctor who saw me really did know about Antiphospholipid Syndrome (APS or APLS) as a disease, but was not too concerned at the fact that I had blood in the urine and he told me that in 'some people' this was quite normal. He checked for pains and took some bloods then had me transferred to the Observations Unit until he was satisfied that I was not in danger. This doctor (Michael Lok) seemed very conscientious, coming back to check on me personally and not leaving it to the nurses to keep me under observation. At the end of the afternoon he decided that this was not a life threatening bleed, and as my INR was still rising (it was 6.8 by then), that I should miss a dose and resume on a lower dose the next day (today). This all seemed rational to me, so I made my way home quite happy with his treatment (even though he did very little0 and on his explanation of the problem. All through the day there was still blood in the urine, but it was more like a raspberry juice colour than the deep red of the morning. This morning I rose and went into the toilet, expecting the weaker coloured blood again, but was alarmed to see the deep red had returned. This time I did not panic I discussed it with Jen (not really the best topic of conversation over breakfast), deciding that we would go about the day normally and check with the St Thomas Clinic telephone line in the afternoon to get advice. I rang them around 2:20 today, and got the same information that I had got from Dr Lok in Bath, making me very pleased that the local hospital had been accurate and had done everything the experts would have done. As for the IME, there are some real 'hooters' on the doctors replies to the sections on there and when I have checked my legal standing I will publish them on the Internet for the world to see. There are some really bad errors in the use of the English language, where the doctor has to place his comment to a printed statement i.e. No problem with walking! to which he has added 'Disagree'. This statement says He does not have a problem walking and the doctor has said I Dd have a problem (by disagreeing with the statement). Later he clearly states I do not have problems walking and that he observed me walking, a direct contradiction to the disagreement to the statement. This has happened on walking, sitting, walking up stairs, carrying and lifting and on manual dexterity. What a nightmare this is turning out to be. 24th November 2003 08:30 The bleeding had not reduced, and the colour of the urine still ranged from purple, in the mornings, to deep strawberry red in the afternoons, my INR had dropped slowly over the five days to reach a low of 2.8. During the morning (24th November 2003) I started passing clots in the urine, with some as long as 3 inches (10cm), so I took myself off to the A&E of the Royal United Hospital in Bath for my own safety. Here I was seen by a doctor, who was concerned at the five days of bleeding, at the fact that I had been sent home and told not to worry and by the fact that I had not been seen or been discussed with a Urologist. This Casualty doctor brought in a Urologist, who has arranged for a series of tests (as an out-patient) to investigate the cause of the bleeding. The blood and clots disappeared from the urine as quickly as it had appeared, and the urine was completely clear by the second time I passed urine on 25th November 2003. 28th November 2003 09:45 Woke late this morning, on rising I felt unsteady on my feet and found it difficult to focus. I walked to the kitchen and tried to focus on the sign across the road that I use as an indicator to my daily wellbeing. I found that I could not read any of the words, which with my spectacles (and on a good day), I can normally read. Words were a little slow, speech slightly slurred and I felt unsteady when walking. On eating my breakfast of porridge, I found that the swallowing was more difficult than usual and I seemed to ‘swallow’ more air than normal with my food. I try to make notes of how I feel as soon after the event as possible to prevent me from forgetting the exact nature of the symptoms. This morning I found it difficult to type as my eyes would not focus on the keyboard, and the left hand seemed to hit one or two keys further left than I wanted (d became a, t became r etc.). 30th November 2003 08:30 Another day where I feel I have had a TIA in the night, with all the usual ‘next day’ feelings and ‘failings’. These are becoming too regular, but my INR is still not up to the therapeutic level of 4.0. Perhaps when it gets there they will get less again. 1st December 2003 09:40 Tests at Royal United Hospital (RUH) at Bath, where I had an ultrasound of kidneys, liver, bladder and abdomen, then on to have another x-ray of the abdomen. The next test was a cystoscopy, which was booked for 13:30 so there was a lot of lazing around and a chance to get in a bit of ‘people watching’. I went in for the cystoscopy quite relaxed as I had read all about the test and the fact that there is a gel lubricant and anesthetic first, then the telescopic lens and light. I lay there talking through Antiphospholipid Syndrome (APS or APLS) with theUrologist who went straight in with the instrument, taking me by surprise. No anesthetic, that was a surprise as it felt a little uncomfortable and stung a bit. It was well worth the discomfort as the Urologist advised that there was no problem in the bladder and that the tear that must have been there for that amount of blood was probably due to the AP antibodies causing damage that had clotted and healed since the bleeding had stopped. To know this amount about the actions of the antibodies was very impressive. Not many doctors are that well advised. 2nd December 2003 10:30 While out shopping I felt a tremendous pain on the left side of the head, knowing exactly what this heralded I waited patiently for the usual effects of a TIA. I was not to be disappointed, along came the visual disturbance, the feeling of numbness in the lower lip, speech became slurred and I suffered mild confusion. These symptoms reduced within the hour, but I went home and spent the rest of the day in bed. By early evening, I felt able to get around, and enjoyed my evening meal. By 21:00 I was again very tired and went to bed for the night. 12th December 2003 17:40 I have not felt up to entering anything for the last 10 days, as I have been suffering from extreme fatigue, headaches and have had a few occasional head pains. I have spent much of the last week sitting in a reclining armchair or asleep in bed, any excursions out or physical exertion have left me very tired and feeling as if my head was going to explode. I was forced to go out on Wednesday (10th December) as my benefits payment had not been paid (will they ever have a week without making a mess of it). I had to collect it in the form of a Giro cheque, walk to the post office to cash it then walk more to the bank to pay it in. I checked my INR today, as I had been forced to adjust my medication due to a high reading that I feel was caused by stress. Today it was at an all time low of 2.8 and as I know I can clot at above 4.0 I am extremely worried for my safety. I have today increased my medication and hope that in 3 days time (the drugs need that long to work) I will be a little safer. I felt a little better for the last 48 hours, but the headaches have increased again with a vengeance. I have been forced to wear my knee support for the last two days due to increased pain and swelling in the right knee. This morning I noticed that the right knee, calf, ankle and foot are all swollen and feel cold. I will have to keep a careful watch on this as it could be a Deep Vein Thrombosis (DVT), which I have been lucky enough to have not suffered from (Yet) as part of the Antiphospholipid Syndrome (APS or APLS). 24th December 2003 14:07 The headache has still not gone, although it does reduce some days. The pain reduces to a slight continual pain, but on exertion it turns into a pronounced throbbing, which is at times extremely painful. Today I tested my INR and it has increased from 2.9 to 5.2, with only an increase of 0.5mg of Warfarin. Yesterday two of my granddaughters stayed the previous night and spent all day with us. We got a couple of DVD’s out and watched them together. Trying to concentrate on the conversations and background of the DVD and with two girls bickering I found that I could not understand any conversation with any sense. The strain of not being able to fully understand what was happening in the movies and in the room with me caused the headache to pound and made me feel decidedly stressed. This and this alone, is the only change that I can directly attribute to the change in the INR. This assumption follows-on from the entry for 20th November 2003 when the stress of having my benefits cut caused an increase in the INR to 6.7 and ended up with internal bleeding. 26th December 2003 08:30 Yesterday was a really good day, with the headache being bearable and not causing too much distraction from the enjoyment of Christmas day. Today is however a different matter, the headache is horrendous, and I have done little more than rest in my chair all day. Any movement of exertion causes my head to pound and increases the pain to an unbearable level. I am already taking the maximum amount of Tramadol and Codeine so can take nothing else to help alleviate the pain. My vision is poor, and concentration levels are low, making it too difficult to watch TV or even to make sense of listening to the TV. With the increase of joint pains and the overall feeling of despair from the head pain this is one of the worst day’s I have had with this illness. 28th December 2003 08:30 Yesterday was a better day, and I felt more able to cope as the head pain had reduced to a bearable level again. This seems to be forming a pattern as today the pain is almost as bad as Boxing day where movement and concentration actually hurt. I cannot go into the room where Jen is playing a CD as the sound creates vibrations in my body and head that cause an increase in the head pain equivalent to the increase of pain from physical exertion. 31st December 2003 18:50 Yesterday I visited a local City to buy some new clothes as over Christmas I found that I have lost so much weight in the last year that my formal clothes (suits, trousers, shirts and jackets) no longer fit. I spent three hours walking around shops, trying on clothes and queuing to pay for them. This morning my feet and legs are in agony, the headache is unbearable and the day-to-day stresses of not hearing back from the St. Thomas Hospital consultant correcting the lack of information required to assist in getting my benefits reinstated are beginning to take their toll on my health. I do not usually let things get me down to the point that I can honestly say I am at present. The need to cope with this disease and the symptoms is always at the forefront of my actions, but this overwhelming depression over the benefits, and the need to have the correct information is having a pronounced effect on my moods. I think it is about time to forget the Mr. Nice guy and to start demanding action from the consultant, her administrative support workers and the Hospital Board, and to start channelling the high emotions of the despair towards making things happen to get my benefits back (or even increased). Watch this space for the sparks to start flying in all directions. Hospitals, consultants, Department of Works and Pensions and the company ‘Medical Services’ who are responsible for this stress, with their inept Doctor Peel and his IME report.
Well 2004 came and went with a new approach to my health care. I arranged for a set of benchmark tests, which included a full Neuro Psychlogical test, a high density MRI, some x-rays of hands and feet, a consultantation with two Dermatologists to discuss the Psoriasis/Exzema debate and all new Lupus and Antiphospholipid Syndrome (APS or APLS) testing. Final concensus of opinion is Lupus with secondary Antiphospholipid Syndrome (APS or APLS), Psoriasis, Psoriatic Arthritis, Prothrombin G20210A mutation and an intermittent Protein S deficiency. With this new found and (now) proven diagnosis I felt that I had succeeded in getting all that I required from St. Thomas Hospital, and wrote to them and the national Hospital for Rheumatic Diseases in Bath, to advise them both that I wished to be treated in Bath in future to save the stress and aggrevation of travelling to London for simple follow up procedures. This involved them sending copies of all relevent tests to Bath. This letter was sent on 20th September and it took until the second week of February 2005 to get those few documents sent. I had to write to the department 3 times, telephone twice and then write to the Chief Executive and complain to the Healthcare Commission before the documents finally arrived in Bath. They have tremendous doctors in St.Thomas' but their administration is absolutely useless. The positive outcome of all this is that I now have benchmark tests and better medications that seem to be helping a little with the fatigue. I have been refused any increase in the Disability Living Allowance, so will have to remain on the lowest level, this is contrary to what my occupational therapists and local social worker believe, as they keep telling me I should be on the top range with the added Mobility allowance for transport. I will see what 2005 brings. Great start to the year, moved to a new bungalow within a sheltered accommodation centre, affording Jen a little more peace-of-mind and some freedom to leave me alone while socializing, shopping or just having a break away from me for a while. My Disability Living Allowance remains unchanged, but I have been granted the 'help with getting around' portion (this used to be called Mobility Allowance), so I am saving for an used electric scooter first then a new (automatic) car as some of the more recent strokes have made the foot/hand coordination of manual gear changes a little 'interesting. I am also starting to 'burn' the clutch as my foot drops on the pedal while between gear changes. The medication regime that has helped in improving my pain management and reducing the deterioration of the fatigue has reached the level where it is considered unsafe for both quantity of dose and length of time on increased dosage. I am having to drop 50% of the Plaquenil and have already noticed the changes, but I am remaining safe and in good spirits. So far this is a great year! During 2005 Dr. Marianne Hales (GP) has treated my blood pressure and raised cholesterol which has added to an overall reduction in TIA's which have gone from every three weeks, to only one between May and November, a great reduction. In November Dr. Harsha Gunawardena, a registrar at the Royal National Hospital for Rheumatic Diseases, in Bath, has increased my Plaquenil again to help with the increased pain and fatigue. He has also suggested that I be placed on Statins to further reduce my risk from heart and lung problems from Cholesterol. I am so pleased to find this doctor, he has more knowledge than any doctor I have met, so far, in my journey through this disease. This year has seen a few changes some good, some not so good and some frightening. The TIA's returned to every three weeks, so a few changes were made in my medications, and at the time of writing this, there has been a gap of eleven weeks, which has to be the longest gap in the last six years. I am less fatigued than last year, and can manage short bursts of energy, but not for too long. I have a new car (pre-ownerd) which can be cleaned with a soapy sponge (just a wipe over) and then hosed off with cold water. This takes about fifteen minutes, and I can manage to complete it. A year ago this would have left me so fatigued I would have had to sleep for a couple of hours to recuperate. That has to be an improvement, but it is still annoying that I can't do more. Blood tests this year have been clear of antibody activity, so that might explain some of the improvement, but I am still permanently anaemic. While on that subject I had a spell where I was very dizzy, and the local hospital diagnosed it as a virus in the inner ear. This went on for a week, and I got so weak I could barely stand unaided. Just crawling to the bathroom to urinate caused me to feel so ill that I had to lay on the bathroom floor for fifteen minutes before crawling back to bed. I had an appointment with my Rheumatoloigist who took a blood sample and rushed me into hospital as my haemaglobin had dropped to 5.5 and over the next two days I was given five pints of blood by transfusion. I suppose I was lucky that I kept the Rheumatologist appointment, as it was not a virus, but severe Haemolytic Anaemia. The blood loss happened between Full Blood Count tests, and happened over a course of just ten days, that was obviously due to a bleed, but there was no blood in my stools and none in my urine. Further MRI's, a virtual colonoscopy and an oesophigael endoscopy could find no area of damage that would have caused such a massive blood loss, so it is still a mystery Oh well this year has been and gone, with little overall change, and a panic or two, but it has been a good year emotionally, and I am continuing to find patients all over the world, who help me in times of trouble, and with whom I can share my database on this nasty disease. Another year has passed with a few changes, only four TIA's all year, so that is something to be thankfull for. One every thirteen weeks as opposed to every three a couple of years ago, that has to be an improvement. I had another bout of Haemolytic Anaemia during the year, which started a whole series of endoscopies and ultrascans, but still no cause was found. It was assumed the low red cell count 'could' have been from small slow bleeds caused by Celebrex (taken for pain and inflammation) and which was exacerbated by the high INR. I have removed Celebrex from my regime, and have had a very noticeable change in both pain and inflammation in the connective tissue which is most noticeable in the hands. I do feel a little down (Please note all those doctors who hear that comment and immediately assume their patients to be depressed, I said a 'little' down not depressed) about the increased pain, and the reduction of my dexterity from the swelling. Apart from the little health glitches we all suffer from disease flares from changes in our lives, from sudden seasonal weather changes and from normal bacterial and viral infections, this has still been a good year. It is now March and the TIA's this year have started off worse than last years average, with a new average of one every eight weeks. Overall joint and connective tissue pain and discomfort has returned to the level that it was a few years ago, and is still deteriorating with the discontinued use of Celebrex. That medication really worked for me, but the assumption it was causing slow bleeds has still not been disproved so I will have to just keep waiting to see. If I do have another bout of Haemolytic Anaemia while not taking Celebrex then I might be able to convince the doctors that it might not have been the Celebrex, and the benefits of Celebrex outweigh the risk of Haemolytic Anaemia, which can be treated with simple transfusions. Well; 2010 came and went with no more anaemia, perhaps it was caused by the Celebrex. The removal of Celebrex from my daily regimen of drugs has made a marked deterioration of joint pains, but only little swelling has returned so that is something to be thankful for. On March the 16th I suffered a small stroke, which I am calling a stroke as the effects lasted four days and this was closely followed on 20th of March by a quite bad TIA. The difficulties from these two episodes lasted well into April, which is why I classed the first one as a stroke and not a TIA. On July 23rd I suffered another TIA with the symptoms fading slowly over the next 18 days during which time I was still stumbling when walking and feeling extreme fatigue. My personal notes for that period show that my fatigue has been increased dramatically since the stroke in March and I was quite despondent. November 2010 was a particularly bad month with another TIA (lasting a mere four days) and another on the 17th November which was followed by a period of severe head pains with approximately 8 episodes per day. On the 20th I had a severe head pain which shot around the right temple followed within minutes by a further TIA. As bad as these all sound this was quite a good year as I have become so used to these minor setbacks that I find I am still enjoying a lot less permanent problems that I know this disease can cause. Kidney Function is still poor, but is not causing any noticeable problems (Kidney impaired levels verging on 3 to 4 each time) Still having a gradual increase in pains following the removal of Celebrex (perhaps) or from the disease, but still bearable. There were five TIA’s over the year but none had any real lasting effect, so this year has not seen any real change in whatever is causing them as I have always been within my target INR range and no real differences have occurred over the same timescale.
This year the joint and muscle pains are definitely getting worse and Dr. Ellie Korendovych has diagnosed Fibromyalgia as she found 12 points of pain coincided with 12 of the 18 points needed for a diagnosis of FM. Increases in my Amitriptyline seems to have some effect on the general pain levels, but they do still get worse over the day. No changes in medications, not much difference in overall pain and fatigue and had only two TIA’s. One was on the 21st February and the second larger one on the 21st June, with a large gap of seventeen weeks between the two, which must be some sort of record.
Page forms part of www.apls.tk, the information site on ANTIPHOSPHOLIPID SYNDROME (APS or ANTIPHOSPHOLIPID SYNDROME (APLS))
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