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| 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 | ||||||||
