| Results from data received up to 1st February 2005 | ||||||||||||
| 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 | |||||
| 351 | 100.00% | |||||||||||
| Gender | ||||||||||||
| Female | 311 | 88.60% | ||||||||||
| Male | 40 | 11.40% | ||||||||||
| Ages in 10 year groups | ||||||||||||
| Up to 30 | 63 | 17.95% | ||||||||||
| 31 to 40 | 131 | 37.32% | ||||||||||
| 41 to 50 | 114 | 32.48% | ||||||||||
| 51 to 60 | 45 | 12.82% | ||||||||||
| 61 and over | 19 | 5.41% | ||||||||||
| Country | ||||||||||||
| UK | 60 | 17.09% | ||||||||||
| USA | 240 | 68.38% | ||||||||||
| Poland | 1 | 0.28% | ||||||||||
| Brazil | 1 | 0.28% | ||||||||||
| Australia | 16 | 4.56% | ||||||||||
| Canada | 18 | 5.13% | ||||||||||
| India | 1 | 0.28% | ||||||||||
| South Africa | 2 | 0.57% | ||||||||||
| Spain | 1 | 0.28% | ||||||||||
| Egypt | 1 | 0.28% | ||||||||||
| New Zealand | 2 | 0.57% | ||||||||||
| Italy | 1 | 0.28% | ||||||||||
| Norway | 1 | 0.28% | ||||||||||
| Jamaica | 1 | 0.28% | ||||||||||
| Eire | 1 | 0.28% | ||||||||||
| Philippines | 1 | 0.28% | ||||||||||
| France | 1 | 0.28% | ||||||||||
| Israel | 1 | 0.28% | ||||||||||
| Information withheld on Country | 1 | 0.28% | ||||||||||
| Number of Doctors before diagnosis (mean average) | 6 | |||||||||||
| Have you been diagnosed with MS | 17 | 4.84% | 15 | 4.27% | 2 | 0.57% | 11.76% | |||||
| Have you been diagnosed with Lupus | 69 | 19.66% | 24 | 6.84% | 45 | 12.82% | 65.22% | |||||
| Occular | ||||||||||||
| Blurred or double vision | 178 | 50.71% | 0 | 0.00% | 178 | 50.71% | 100.00% | |||||
| Visual disturbance | 211 | 60.11% | 128 | 36.47% | 83 | 23.65% | 39.34% | |||||
| Visual loss | 110 | 31.34% | 73 | 20.80% | 37 | 10.54% | 33.64% | |||||
| Retinal artery occlusion | 17 | 4.84% | 7 | 1.99% | 10 | 2.85% | 58.82% | |||||
| Retinal vein thrombosis | 11 | 3.13% | 5 | 1.42% | 6 | 1.71% | 54.55% | |||||
| Cardiorespiratory | ||||||||||||
| Chest pain | 178 | 50.71% | 115 | 32.76% | 63 | 17.95% | 35.39% | |||||
| Radiating arm pain | 118 | 33.62% | 74 | 21.08% | 44 | 12.54% | 37.29% | |||||
| Shortness of breath | 170 | 48.43% | 117 | 33.33% | 53 | 15.10% | 31.18% | |||||
| Cardiac | ||||||||||||
| Insufficiency murmur | 66 | 18.80% | 35 | 9.97% | 31 | 8.83% | 46.97% | |||||
| Myocardial infarction | 47 | 13.39% | 18 | 5.13% | 29 | 8.26% | 61.70% | |||||
| Gastrointestinal | ||||||||||||
| Abdominal pain | 162 | 46.15% | 107 | 30.48% | 55 | 15.67% | 33.95% | |||||
| Abdominal distension | 164 | 46.72% | 105 | 29.91% | 59 | 16.81% | 35.98% | |||||
| Abdominal migraine | 49 | 13.96% | 35 | 9.97% | 14 | 3.99% | 28.57% | |||||
| Emesis (vomiting) | 54 | 15.38% | 36 | 10.26% | 18 | 5.13% | 33.33% | |||||
| Right upper quadrant | 44 | 12.54% | 31 | 8.83% | 13 | 3.70% | 29.55% | |||||
| Abdominal tenderness | 47 | 13.39% | 29 | 8.26% | 18 | 5.13% | 38.30% | |||||
| Pulmonary | ||||||||||||
| Respiratory distress | 78 | 22.22% | 53 | 15.10% | 25 | 7.12% | 32.05% | |||||
| Tachypnea | 53 | 15.10% | 38 | 10.83% | 15 | 4.27% | 28.30% | |||||
| Pulmonary embolism | 67 | 19.09% | 48 | 13.68% | 19 | 5.41% | 28.36% | |||||
| Pulmonary hypertension | 29 | 8.26% | 14 | 3.99% | 15 | 4.27% | 51.72% | |||||
| Peripheral Vascular | ||||||||||||
| Leg pain | 213 | 60.68% | 140 | 39.89% | 73 | 20.80% | 34.27% | |||||
| Leg swelling | 152 | 43.30% | 103 | 29.34% | 49 | 13.96% | 32.24% | |||||
| Claudication | 148 | 42.17% | 89 | 25.36% | 59 | 16.81% | 39.86% | |||||
| Digital ulcerations | 37 | 10.54% | 19 | 5.41% | 18 | 5.13% | 48.65% | |||||
| Leg ulcerations | 20 | 5.70% | 12 | 3.42% | 8 | 2.28% | 40.00% | |||||
| Cold-induced finger and/or toe pain | 159 | 45.30% | 106 | 30.20% | 53 | 15.10% | 33.33% | |||||
| Bone infarction | 114 | 32.48% | 75 | 21.37% | 39 | 11.11% | 34.21% | |||||
| Avascular necrosis | 109 | 31.05% | 64 | 18.23% | 45 | 12.82% | 41.28% | |||||
| Limb swelling (DVT) | 106 | 30.20% | 77 | 21.94% | 29 | 8.26% | 27.36% | |||||
| Peripheral edema | 56 | 15.95% | 31 | 8.83% | 25 | 7.12% | 44.64% | |||||
| Decreased capillary refill | 30 | 8.55% | 16 | 4.56% | 14 | 3.99% | 46.67% | |||||
| Decreased pulses | 34 | 9.69% | 18 | 5.13% | 16 | 4.56% | 47.06% | |||||
| Decreased perfusion | 21 | 5.98% | 12 | 3.42% | 9 | 2.56% | 42.86% | |||||
| Gangrene | 7 | 1.99% | 5 | 1.42% | 2 | 0.57% | 28.57% | |||||
| Musculoskeletal | ||||||||||||
| Bone pain | 155 | 44.16% | 97 | 27.64% | 58 | 16.52% | 37.42% | |||||
| Joint pain | 236 | 67.24% | 153 | 43.59% | 83 | 23.65% | 35.17% | |||||
| Cutaneous | ||||||||||||
| Purpuric and/or petechial rashes | 37 | 10.54% | 16 | 4.56% | 21 | 5.98% | 56.76% | |||||
| Livedo reticularis | 29 | 8.26% | 15 | 4.27% | 14 | 3.99% | 48.28% | |||||
| Dusky fingers and/or toes | 49 | 13.96% | 31 | 8.83% | 18 | 5.13% | 36.73% | |||||
| Blanching of fingers and/or toes | 57 | 16.24% | 39 | 11.11% | 18 | 5.13% | 31.58% | |||||
| Purpuric lesions | 23 | 6.55% | 11 | 3.13% | 12 | 3.42% | 52.17% | |||||
| Superficial thrombophlebitis | 40 | 11.40% | 23 | 6.55% | 17 | 4.84% | 42.50% | |||||
| Vasospasm | 79 | 22.51% | 56 | 15.95% | 23 | 6.55% | 29.11% | |||||
| Splinter hemorrhages | 14 | 3.99% | 9 | 2.56% | 5 | 1.42% | 35.71% | |||||
| Peripheral infarctions | 11 | 3.13% | 7 | 1.99% | 4 | 1.14% | 36.36% | |||||
| Skin ulcerations | 11 | 3.13% | 7 | 1.99% | 4 | 1.14% | 36.36% | |||||
| Bruising | 34 | 9.69% | 16 | 4.56% | 18 | 5.13% | 52.94% | |||||
| Neurological and Psychiatric | ||||||||||||
| Syncope | 54 | 15.38% | 37 | 10.54% | 17 | 4.84% | 31.48% | |||||
| Seizures | 66 | 18.80% | 41 | 11.68% | 25 | 7.12% | 37.88% | |||||
| Headache (migraine) | 253 | 72.08% | 184 | 52.42% | 69 | 19.66% | 27.27% | |||||
| Ascending weakness | 137 | 39.03% | 83 | 23.65% | 54 | 15.38% | 39.42% | |||||
| Tremors | 118 | 33.62% | 72 | 20.51% | 46 | 13.11% | 38.98% | |||||
| Memory loss | 228 | 64.96% | 121 | 34.47% | 107 | 30.48% | 46.93% | |||||
| Problems with concentrating, reading comprehension, calculations (change in performance) | 233 | 66.38% | 129 | 36.75% | 104 | 29.63% | 44.64% | |||||
| Stroke/CVA (cerebrovascular accident) | 86 | 24.50% | 55 | 15.67% | 31 | 8.83% | 36.05% | |||||
| TIA | 128 | 36.47% | 74 | 21.08% | 54 | 15.38% | 42.19% | |||||
| vasovasorum(or blood vessel) ischemia/infarction | 77 | 21.94% | 48 | 13.68% | 29 | 8.26% | 37.66% | |||||
| Paralysis, | 62 | 17.66% | 35 | 9.97% | 27 | 7.69% | 43.55% | |||||
| Abnormal movements | 71 | 20.23% | 38 | 10.83% | 33 | 9.40% | 46.48% | |||||
| Multiple sclerosis-like disorder | 140 | 39.89% | 75 | 21.37% | 65 | 18.52% | 46.43% | |||||
| Endocrine | ||||||||||||
| Weakness | 212 | 60.40% | 123 | 35.04% | 89 | 25.36% | 41.98% | |||||
| Fatigue | 268 | 76.35% | 161 | 45.87% | 107 | 30.48% | 39.93% | |||||
| Arthralgia | 107 | 30.48% | 71 | 20.23% | 36 | 10.26% | 33.64% | |||||
| Abdominal pain | 77 | 21.94% | 47 | 13.39% | 30 | 8.55% | 38.96% | |||||
| Adrenal infarction/hemorrhage | 34 | 9.69% | 19 | 5.41% | 15 | 4.27% | 44.12% | |||||
| Genitourinary | ||||||||||||
| Hematuria (blood in urine) | 55 | 15.67% | 29 | 8.26% | 26 | 7.41% | 47.27% | |||||
| Peripheral edema | 64 | 18.23% | 42 | 11.97% | 22 | 6.27% | 34.38% | |||||
| Renal | ||||||||||||
| Hypertension | 69 | 19.66% | 29 | 8.26% | 40 | 11.40% | 57.97% | |||||
| Renal artery thrombosis | 8 | 2.28% | 3 | 0.85% | 5 | 1.42% | 62.50% | |||||
| Intrarenal vascular lesions (scar tissue) | 16 | 4.56% | 6 | 1.71% | 10 | 2.85% | 62.50% | |||||
| Hematuria (blood in urine) | 53 | 15.10% | 26 | 7.41% | 27 | 7.69% | 50.94% | |||||
| Renal vein thrombosis | 7 | 1.99% | 2 | 0.57% | 5 | 1.42% | 71.43% | |||||
| Pregnancy Related | ||||||||||||
| Miscarriages (Number of Patients) | 173 | 49.29% | 173 | 49.29% | 0 | 0.00% | 0.00% | |||||
| Premature birth (Number of Patients) | 76 | 21.65% | 57 | 16.24% | 19 | 5.41% | 25.00% | |||||
| IUGR | 30 | 8.55% | 15 | 4.27% | 15 | 4.27% | 50.00% | |||||
| Oligohydramnios | 25 | 7.12% | 17 | 4.84% | 8 | 2.28% | 32.00% | |||||
| Chorea gravidarum | 14 | 3.99% | 8 | 2.28% | 6 | 1.71% | 42.86% | |||||
| Placental infarction | 37 | 10.54% | 23 | 6.55% | 14 | 3.99% | 37.84% | |||||
| Preeclampsia | 54 | 15.38% | 36 | 10.26% | 18 | 5.13% | 33.33% | |||||
| Toxemia of pregnancy | 40 | 11.40% | 24 | 6.84% | 16 | 4.56% | 40.00% | |||||
| Neonatal thromboembolism | 11 | 3.13% | 7 | 1.99% | 4 | 1.14% | 36.36% | |||||
| Diagnosed APS during tests at pregnancy | 153 | 43.59% | 0 | 0.00% | 0 | 0.00% | 99.72% | |||||
| Family History | ||||||||||||
| Pregnancy related family history | 86 | 24.50% | Relationship to pre or post diagnosis is immaterial | |||||||||
| Family history of MI or stroke | 56 | 15.95% | ||||||||||
| Family history of DVT, Phlebitis or PE | 90 | 25.64% | ||||||||||
| Family History of Migraine, Reynaud's or TIA's | 123 | 35.04% | ||||||||||
| Medical History | ||||||||||||
| Use of Oral Contraception during tests at pregnancy | 98 | 27.92% | Relationship to pre or post diagnosis is immaterial | |||||||||
| Other long-term use of medication | 176 | 50.14% | ||||||||||
| Vaccinations | ||||||||||||
| vaccinations | 274 | 78.06% | Relationship to pre or post diagnosis is immaterial | |||||||||
| Trauma or Stress Related | ||||||||||||
| Traumatic or stressful event prior to onset | 258 | 73.50% | Relationship to pre or post diagnosis is immaterial | |||||||||
| Other Symptoms | ||||||||||||
| Back pain | 16 | 4.56% | ||||||||||
| Pain in side of ribs (flank) | 5 | 1.42% | ||||||||||
| Heat sensitivity | 4 | 1.14% | ||||||||||
| Sun sensitivity | 6 | 1.71% | ||||||||||
| Nasal ulcers | 6 | 1.71% | ||||||||||
| Blood blisters in mouth | 2 | 0.57% | ||||||||||
| Mouth ulcers | 7 | 1.99% | ||||||||||
| Psoriatic Arthritis | 2 | 0.57% | ||||||||||
| Muscle cramps | 3 | 0.85% | ||||||||||
| Sinus problems | 5 | 1.42% | ||||||||||