| Results from data received up to 1st January 2004 | |||||||||
| Questions | Total completed surveys | % | Total prior to diagnosis | % | Number of patients with symptoms since diagnosis | % of patients with new symptoms (after diagnosis) | % of patients with this symptom which appeared after diagnosis | ||
| 253 | 100.00% | ||||||||
| Gender | |||||||||
| Female | 222 | 87.75% | |||||||
| Male | 31 | 12.25% | |||||||
| Ages in 10 year groups | |||||||||
| Up to 30 | 38 | 15.02% | |||||||
| 31 to 40 | 79 | 31.23% | |||||||
| 41 to 50 | 86 | 33.99% | |||||||
| 51 to 60 | 38 | 15.02% | |||||||
| 61 and over | 12 | 4.74% | |||||||
| Country | |||||||||
| UK | 43 | 17.00% | |||||||
| USA | 176 | 69.57% | |||||||
| Poland | 1 | 0.40% | |||||||
| Brazil | 1 | 0.40% | |||||||
| Australia | 12 | 4.74% | |||||||
| Canada | 10 | 3.95% | |||||||
| India | 1 | 0.40% | |||||||
| South Africa | 1 | 0.40% | |||||||
| Spain | 1 | 0.40% | |||||||
| Egypt | 1 | 0.40% | |||||||
| New Zealand | 1 | 0.40% | |||||||
| Italy | 1 | 0.40% | |||||||
| Norway | 1 | 0.40% | |||||||
| Jamaica | 1 | 0.40% | |||||||
| Eire | 1 | 0.40% | |||||||
| Information withheld on Country | 1 | 0.40% | |||||||
| Number of Doctors before diagnosis (mean average) | 6 | ||||||||
| Have you been diagnosed with MS | 14 | 5.53% | 12 | 4.74% | 2 | 0.79% | 14.29% | ||
| Have you been diagnosed with Lupus | 58 | 22.92% | 19 | 7.51% | 39 | 15.42% | 67.24% | ||
| Occular | |||||||||
| Blurred or double vision | 130 | 51.38% | 0 | 0.00% | 130 | 51.38% | 100.00% | ||
| Visual disturbance | 153 | 60.47% | 92 | 36.36% | 61 | 24.11% | 39.87% | ||
| Visual loss | 85 | 33.60% | 57 | 22.53% | 28 | 11.07% | 32.94% | ||
| Retinal artery occlusion | 14 | 5.53% | 6 | 2.37% | 8 | 3.16% | 57.14% | ||
| Retinal vein thrombosis | 9 | 3.56% | 4 | 1.58% | 5 | 1.98% | 55.56% | ||
| Cardiorespiratory | |||||||||
| Chest pain | 136 | 53.75% | 89 | 35.18% | 47 | 18.58% | 34.56% | ||
| Radiating arm pain | 86 | 33.99% | 58 | 22.92% | 28 | 11.07% | 32.56% | ||
| Shortness of breath | 124 | 49.01% | 89 | 35.18% | 35 | 13.83% | 28.23% | ||
| Cardiac | |||||||||
| Insufficiency murmur | 49 | 19.37% | 23 | 9.09% | 26 | 10.28% | 53.06% | ||
| Myocardial infarction | 34 | 13.44% | 18 | 7.11% | 16 | 6.32% | 47.06% | ||
| Gastrointestinal | |||||||||
| Abdominal pain | 119 | 47.04% | 77 | 30.43% | 42 | 16.60% | 35.29% | ||
| Abdominal distension | 118 | 46.64% | 77 | 30.43% | 41 | 16.21% | 34.75% | ||
| Abdominal migraine | 31 | 12.25% | 22 | 8.70% | 9 | 3.56% | 29.03% | ||
| Emesis (vomiting) | 34 | 13.44% | 20 | 7.91% | 14 | 5.53% | 41.18% | ||
| Right upper quadrant | 33 | 13.04% | 23 | 9.09% | 10 | 3.95% | 30.30% | ||
| Abdominal tenderness | 31 | 12.25% | 18 | 7.11% | 13 | 5.14% | 41.94% | ||
| Pulmonary | |||||||||
| Respiratory distress | 56 | 22.13% | 40 | 15.81% | 16 | 6.32% | 28.57% | ||
| Tachypnea | 43 | 17.00% | 32 | 12.65% | 11 | 4.35% | 25.58% | ||
| Pulmonary embolism | 50 | 19.76% | 35 | 13.83% | 15 | 5.93% | 30.00% | ||
| Pulmonary hypertension | 24 | 9.49% | 11 | 4.35% | 13 | 5.14% | 54.17% | ||
| Peripheral Vascular | |||||||||
| Leg pain | 158 | 62.45% | 104 | 41.11% | 54 | 21.34% | 34.18% | ||
| Leg swelling | 120 | 47.43% | 85 | 33.60% | 35 | 13.83% | 29.17% | ||
| Claudication | 112 | 44.27% | 68 | 26.88% | 44 | 17.39% | 39.29% | ||
| Digital ulcerations | 26 | 10.28% | 14 | 5.53% | 12 | 4.74% | 46.15% | ||
| Leg ulcerations | 12 | 4.74% | 8 | 3.16% | 4 | 1.58% | 33.33% | ||
| Cold-induced finger and/or toe pain | 119 | 47.04% | 80 | 31.62% | 39 | 15.42% | 32.77% | ||
| Bone infarction | 87 | 34.39% | 59 | 23.32% | 28 | 11.07% | 32.18% | ||
| Avascular necrosis | 79 | 31.23% | 47 | 18.58% | 32 | 12.65% | 40.51% | ||
| Limb swelling (DVT) | 80 | 31.62% | 60 | 23.72% | 20 | 7.91% | 25.00% | ||
| Peripheral edema | 40 | 15.81% | 25 | 9.88% | 15 | 5.93% | 37.50% | ||
| Decreased capillary refill | 22 | 8.70% | 12 | 4.74% | 10 | 3.95% | 45.45% | ||
| Decreased pulses | 30 | 11.86% | 17 | 6.72% | 13 | 5.14% | 43.33% | ||
| Decreased perfusion | 19 | 7.51% | 11 | 4.35% | 8 | 3.16% | 42.11% | ||
| Gangrene | 6 | 2.37% | 4 | 1.58% | 2 | 0.79% | 33.33% | ||
| Musculoskeletal | |||||||||
| Bone pain | 113 | 44.66% | 70 | 27.67% | 43 | 17.00% | 38.05% | ||
| Joint pain | 173 | 68.38% | 115 | 45.45% | 58 | 22.92% | 33.53% | ||
| Cutaneous | |||||||||
| Purpuric and/or petechial rashes | 31 | 12.25% | 14 | 5.53% | 17 | 6.72% | 54.84% | ||
| Livedo reticularis | 24 | 9.49% | 14 | 5.53% | 10 | 3.95% | 41.67% | ||
| Dusky fingers and/or toes | 34 | 13.44% | 22 | 8.70% | 12 | 4.74% | 35.29% | ||
| Blanching of fingers and/or toes | 42 | 16.60% | 29 | 11.46% | 13 | 5.14% | 30.95% | ||
| Purpuric lesions | 20 | 7.91% | 11 | 4.35% | 9 | 3.56% | 45.00% | ||
| Superficial thrombophlebitis | 30 | 11.86% | 17 | 6.72% | 13 | 5.14% | 43.33% | ||
| Vasospasm | 60 | 23.72% | 44 | 17.39% | 16 | 6.32% | 26.67% | ||
| Splinter hemorrhages | 9 | 3.56% | 7 | 2.77% | 2 | 0.79% | 22.22% | ||
| Peripheral infarctions | 8 | 3.16% | 6 | 2.37% | 2 | 0.79% | 25.00% | ||
| Skin ulcerations | 8 | 3.16% | 5 | 1.98% | 3 | 1.19% | 37.50% | ||
| Bruising | 23 | 9.09% | 11 | 4.35% | 12 | 4.74% | 52.17% | ||
| Neurological and Psychiatric | |||||||||
| Syncope | 42 | 16.60% | 31 | 12.25% | 11 | 4.35% | 26.19% | ||
| Seizures | 48 | 18.97% | 32 | 12.65% | 16 | 6.32% | 33.33% | ||
| Headache (migraine) | 182 | 71.94% | 133 | 52.57% | 49 | 19.37% | 26.92% | ||
| Ascending weakness | 102 | 40.32% | 62 | 24.51% | 40 | 15.81% | 39.22% | ||
| Tremors | 91 | 35.97% | 52 | 20.55% | 39 | 15.42% | 42.86% | ||
| Memory loss | 167 | 66.01% | 88 | 34.78% | 79 | 31.23% | 47.31% | ||
| Problems with concentrating, reading comprehension, calculations (change in performance) | 168 | 66.40% | 92 | 36.36% | 76 | 30.04% | 45.24% | ||
| Stroke/CVA (cerebrovascular accident) | 66 | 26.09% | 41 | 16.21% | 25 | 9.88% | 37.88% | ||
| TIA | 100 | 39.53% | 59 | 23.32% | 41 | 16.21% | 41.00% | ||
| vasovasorum(or blood vessel) ischemia/infarction | 59 | 23.32% | 35 | 13.83% | 24 | 9.49% | 40.68% | ||
| Paralysis, | 44 | 17.39% | 25 | 9.88% | 19 | 7.51% | 43.18% | ||
| Abnormal movements | 53 | 20.95% | 25 | 9.88% | 28 | 11.07% | 52.83% | ||
| Multiple sclerosis-like disorder | 104 | 41.11% | 56 | 22.13% | 48 | 18.97% | 46.15% | ||
| Endocrine | |||||||||
| Weakness | 162 | 64.03% | 94 | 37.15% | 68 | 26.88% | 41.98% | ||
| Fatigue | 200 | 79.05% | 117 | 46.25% | 83 | 32.81% | 41.50% | ||
| Arthralgia | 82 | 32.41% | 52 | 20.55% | 30 | 11.86% | 36.59% | ||
| Abdominal pain | 54 | 21.34% | 32 | 12.65% | 22 | 8.70% | 40.74% | ||
| Adrenal infarction/hemorrhage | 25 | 9.88% | 12 | 4.74% | 13 | 5.14% | 52.00% | ||
| Genitourinary | |||||||||
| Hematuria (blood in urine) | 40 | 15.81% | 20 | 7.91% | 20 | 7.91% | 50.00% | ||
| Peripheral edema | 48 | 18.97% | 29 | 11.46% | 19 | 7.51% | 39.58% | ||
| Renal | |||||||||
| Hypertension | 46 | 18.18% | 29 | 11.46% | 17 | 6.72% | 36.96% | ||
| Renal artery thrombosis | 4 | 1.58% | 1 | 0.40% | 3 | 1.19% | 75.00% | ||
| Intrarenal vascular lesions (scar tissue) | 7 | 2.77% | 2 | 0.79% | 5 | 1.98% | 71.43% | ||
| Hematuria (blood in urine) | 40 | 15.81% | 19 | 7.51% | 21 | 8.30% | 52.50% | ||
| Renal vein thrombosis | 5 | 1.98% | 1 | 0.40% | 4 | 1.58% | 80.00% | ||
| Pregnancy Related | |||||||||
| Miscarriages (Number of Patients) | 119 | 47.04% | 119 | 47.04% | 0 | 0.00% | 0.00% | ||
| Premature birth (Number of Patients) | 52 | 20.55% | 40 | 15.81% | 12 | 4.74% | 23.08% | ||
| IUGR | 25 | 9.88% | 15 | 5.93% | 10 | 3.95% | 40.00% | ||
| Oligohydramnios | 15 | 5.93% | 10 | 3.95% | 5 | 1.98% | 33.33% | ||
| Chorea gravidarum | 9 | 3.56% | 4 | 1.58% | 5 | 1.98% | 55.56% | ||
| Placental infarction | 26 | 10.28% | 17 | 6.72% | 9 | 3.56% | 34.62% | ||
| Preeclampsia | 37 | 14.62% | 23 | 9.09% | 14 | 5.53% | 37.84% | ||
| Toxemia of pregnancy | 30 | 11.86% | 16 | 6.32% | 14 | 5.53% | 46.67% | ||
| Neonatal thromboembolism | 8 | 3.16% | 5 | 1.98% | 3 | 1.19% | 37.50% | ||
| Diagnosed APS during tests at pregnancy | 23 | 9.09% | 1 | 0.40% | 22 | 8.70% | 95.65% | ||
| Family History | |||||||||
| Pregnancy related family history | 63 | 24.90% | Relationship to pre or post diagnosis is immaterial | ||||||
| Family history of MI or stroke | 43 | 17.00% | |||||||
| Family history of DVT, Phlebitis or PE | 65 | 25.69% | |||||||
| Family History of Migraine, Reynaud's or TIA's | 89 | 35.18% | |||||||
| Medical History | |||||||||
| Use of Oral Contraception during tests at pregnancy | 18 | 7.11% | Relationship to pre or post diagnosis is immaterial | ||||||
| Other long-term use of medication | 86 | 33.99% | |||||||
| Vaccinations | |||||||||
| vaccinations | 179 | 70.75% | Relationship to pre or post diagnosis is immaterial | ||||||
| Trauma or Stress Related | |||||||||
| Traumatic or stressful event prior to onset | 120 | 47.43% | Relationship to pre or post diagnosis is immaterial | ||||||
| Other Symptoms | |||||||||
| Back pain | 7 | 2.77% | |||||||
| Pain in side of ribs (flank) | 4 | 1.58% | |||||||
| Heat sensitivity | 3 | 1.19% | |||||||
| Sun sensitivity | 6 | 2.37% | |||||||
| Nasal ulcers | 5 | 1.98% | |||||||
| Blood blisters in mouth | 1 | 0.40% | |||||||
| Mouth ulcers | 4 | 1.58% | |||||||
| Psoriatic Arthritis | 2 | 0.79% | |||||||
| Muscle cramps | 2 | 0.79% | |||||||
| Sinus problems | 3 | 1.19% | |||||||
| Spontaneous bruising | 4 | 1.58% | |||||||
| Thyroid problems (over/under active) | 4 | 1.58% | |||||||
| Dizzynes | 15 | 5.93% | |||||||
| Constant headaches | 10 | 3.95% | |||||||
| Notes and assumptions | |||||||||
| As the questionnaire was specific in asking if a patient suffered from a symptom and if the symptom was there prior to diagnosis, I am making the assumption that the results in red have all appeared after diagnosis. | |||||||||
| A further assumption is that on diagnosis treatment with Warfarin (Coumadin) or Aspirin would have commenced. The figures then confirm that symptoms are still occurring post commencement of treatment. The disease is therefore degenerative, and the general opinion that 'symptoms disappear with treatment' is little more than a figment of someones overactive imagination. | |||||||||
| For Miscarriages and premature births I have included the number of patients who reported them and not a number of actual intances. A majority of these events led to diagnosis as a result of tests instigated after one, or many, pregnancy related problems. I have therefore treated all miscarriages as prior to diagnosis for this survey. | |||||||||
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Many replies included lists of other diagnosed diseases and many symptoms that were already addressed in the questions. Wherever possible I have included these symptoms in the revevant question and used only those that are not previously listed as part of the 'Other Symptoms' listing. Page forms part of www.apls.tk, the information site on ANTIPHOSPHOLIPID SYNDROME (APS or ANTIPHOSPHOLIPID SYNDROME (APLS))
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