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Temporary Results from data dated 12/08/03
Questions	Total completed surveys	%	Total prior to diagnosis	%	Symptoms since diagnosis	% of total patients	% of total with this symptom
	162	100.00%
Gender
Ages in 10 year groups
Up to 30	24	14.81%
31 to 40	47	29.01%
41 to 50	58	35.80%
51 to 60	25	15.43%
61 and over	8	4.94%
County and Country
UK	25	15.43%
USA	110	67.90%
Poland	1	0.62%
Australia	8	4.94%
Canada	9	5.56%
Spain	1	0.62%
Egypt	1	0.62%
New Zealand	1	0.62%
Italy	1	0.62%
Norway	1	0.62%
Jamaica	1	0.62%
Eire	1	0.62%
Information withheld on Country	1	0.62%
Number of Doctors before diagnosis (mean average)	9
Have you been diagnosed with MS	9	5.56%	8	4.94%	1	0.62%	11.11%
Have you been diagnosed with Lupus	36	0.00%	12	7.41%	24	14.81%	66.67%
Occular
Blurred or double vision	83	51.23%	0	0.00%	83	51.23%	100.00%
Visual disturbance	92	56.79%	55	33.95%	37	22.84%	40.22%
Visual loss	51	31.48%	31	19.14%	20	12.35%	39.22%
Retinal artery occlusion	6	3.70%	1	0.62%	5	3.09%	83.33%
Retinal vein thrombosis	2	1.23%	1	0.62%	1	0.62%	50.00%
Cardiorespiratory
Chest pain	79	48.77%	49	30.25%	30	18.52%	37.97%
Radiating arm pain	51	31.48%	30	18.52%	21	12.96%	41.18%
Shortness of breath	69	42.59%	48	29.63%	21	12.96%	30.43%
Cardiac
Insufficiency murmur	33	20.37%	16	9.88%	17	10.49%	51.52%
Myocardial infarction	20	12.35%	11	6.79%	9	5.56%	45.00%
Gastrointestinal
Abdominal pain	72	44.44%	44	27.16%	28	17.28%	38.89%
Abdominal distension	69	42.59%	43	26.54%	26	16.05%	37.68%
Abdominal migraine	15	9.26%	11	6.79%	4	2.47%	26.67%
Emesis (vomiting)	19	11.73%	11	6.79%	8	4.94%	42.11%
Right upper quadrant	19	11.73%	14	8.64%	5	3.09%	26.32%
Abdominal tenderness	17	10.49%	11	6.79%	6	3.70%	35.29%
Pulmonary
Respiratory distress	33	20.37%	23	14.20%	10	6.17%	30.30%
Tachypnea	26	16.05%	20	12.35%	6	3.70%	23.08%
Pulmonary embolism	34	20.99%	24	14.81%	10	6.17%	29.41%
Pulmonary hypertension	15	9.26%	8	4.94%	7	4.32%	46.67%
Peripheral Vascular
Leg pain	96	59.26%	57	35.19%	39	24.07%	40.63%
Leg swelling	73	45.06%	50	30.86%	23	14.20%	31.51%
Claudication	65	40.12%	35	21.60%	30	18.52%	46.15%
Digital ulcerations	8	4.94%	7	77.78%	1	11.11%	12.50%
Leg ulcerations	8	4.94%	4	2.47%	4	2.47%	50.00%
Cold-induced finger and/or toe pain	78	48.15%	47	29.01%	31	19.14%	39.74%
Bone infarction	53	32.72%	34	20.99%	19	11.73%	35.85%
Avascular necrosis	48	29.63%	26	16.05%	22	13.58%	45.83%
Limb swelling (DVT)	51	31.48%	40	24.69%	11	6.79%	21.57%
Peripheral edema	24	14.81%	14	8.64%	10	6.17%	41.67%
Decreased capillary refill	15	9.26%	9	5.56%	6	3.70%	40.00%
Decreased pulses	19	11.73%	12	7.41%	7	4.32%	36.84%
Decreased perfusion	14	8.64%	8	4.94%	6	3.70%	42.86%
Gangrene	4	2.47%	2	1.23%	2	1.23%	50.00%
Musculoskeletal
Bone pain	67	41.36%	35	21.60%	32	19.75%	47.76%
Joint pain	107	66.05%	65	40.12%	42	25.93%	39.25%
Cutaneous
Purpuric and/or petechial rashes	20	12.35%	9	5.56%	11	6.79%	55.00%
Livedo reticularis	16	9.88%	12	7.41%	4	2.47%	25.00%
Dusky fingers and/or toes	21	12.96%	13	8.02%	8	4.94%	38.10%
Blanching of fingers and/or toes	25	15.43%	15	9.26%	10	6.17%	40.00%
Purpuric lesions	11	6.79%	6	3.70%	5	3.09%	45.45%
Superficial thrombophlebitis	20	12.35%	12	7.41%	8	4.94%	40.00%
Vasospasm	41	25.31%	30	18.52%	11	6.79%	26.83%
Splinter hemorrhages	5	3.09%	4	2.47%	1	0.62%	20.00%
Peripheral infarctions	4	2.47%	2	1.23%	2	1.23%	50.00%
Skin ulcerations	6	3.70%	3	1.85%	3	1.85%	50.00%
Bruising	15	9.26%	7	4.32%	8	4.94%	53.33%
Neurological and Psychiatric
Syncope	27	16.67%	19	11.73%	8	4.94%	29.63%
Seizures	27	16.67%	21	12.96%	6	3.70%	22.22%
Headache (migraine)	116	71.60%	83	51.23%	33	20.37%	28.45%
Ascending weakness	64	39.51%	36	22.22%	28	17.28%	43.75%
Tremors	56	34.57%	28	17.28%	28	17.28%	50.00%
Memory loss	105	64.81%	58	35.80%	47	29.01%	44.76%
Problems with concentrating, reading comprehension, calculations (change in performance)	102	62.96%	56	34.57%	46	28.40%	45.10%
Stroke/CVA (cerebrovascular accident)	47	29.01%	33	20.37%	14	8.64%	29.79%
TIA	68	41.98%	44	27.16%	24	14.81%	35.29%
vasovasorum(or blood vessel) ischemia/infarction	41	25.31%	23	14.20%	18	11.11%	43.90%
Paralysis,	32	19.75%	21	12.96%	11	6.79%	34.38%
Abnormal movements	38	23.46%	18	11.11%	20	12.35%	52.63%
Multiple sclerosis-like disorder	61	37.65%	34	20.99%	27	16.67%	44.26%
Endocrine
Weakness	96	59.26%	55	33.95%	41	25.31%	42.71%
Fatigue	124	76.54%	70	43.21%	54	33.33%	43.55%
Arthralgia	53	32.72%	35	21.60%	18	11.11%	33.96%
Abdominal pain	30	18.52%	16	9.88%	14	8.64%	46.67%
Adrenal infarction/hemorrhage	14	8.64%	6	3.70%	8	4.94%	57.14%
Genitourinary
Hematuria (blood in urine)	19	26.03%	9	5.56%	10	6.17%	52.63%
Peripheral edema	29	44.62%	18	11.11%	11	6.79%	37.93%
Renal
Hypertension	25	15.43%	15	9.26%	10	6.17%	40.00%
Renal artery thrombosis	2	1.23%	0	0.00%	2	1.23%	100.00%
Intrarenal vascular lesions (scar tissue)	4	2.47%	1	0.62%	3	1.85%	75.00%
Hematuria (blood in urine)	20	12.35%	12	7.41%	8	4.94%	40.00%
Renal vein thrombosis	4	2.47%	0	0.00%	4	2.47%	100.00%
Pregnancy Related
Miscarriages (Number of Patients)	69	42.59%	69	42.59%	0	0.00%	0.00%
Premature birth (Number of Patients)	35	21.60%	28	17.28%	7	4.32%	20.00%
IUGR	16	9.88%	10	6.17%	6	3.70%	37.50%
Oligohydramnios	8	4.94%	5	3.09%	3	1.85%	37.50%
Chorea gravidarum	6	3.70%	3	1.85%	3	1.85%	50.00%
Placental infarction	16	9.88%	11	6.79%	5	3.09%	31.25%
Preeclampsia	23	14.20%	15	9.26%	8	4.94%	34.78%
Toxemia of pregnancy	17	10.49%	11	6.79%	6	3.70%	35.29%
Neonatal thromboembolism	3	1.85%	1	0.62%	2	1.23%	66.67%
Diagnosed APS during tests at pregnancy	12	7.41%	0	0.00%	12	7.41%	100.00%
Family History
Pregnancy related family history	31	19.14%	Relationship to pre or post diagnosis is immaterial
Family history of MI or stroke	26	16.05%
Family history of DVT, Phlebitis or PE	40	24.69%
Family History of Migraine, Reynaud's or TIA's	47	29.01%
Medical History
Use of Oral Contraception during tests at pregnancy	43	26.54%	Relationship to pre or post diagnosis is immaterial
Other long-term use of medication		0.00%	Relationship to pre or post diagnosis is immaterial
Vaccinations
vaccinations		0.00%	Relationship to pre or post diagnosis is immaterial
Trauma or Stress Related
Traumatic or stressful event prior to onset		0.00%	Relationship to pre or post diagnosis is immaterial
Other Symptoms (in depth analysis required at close of survey)
Any other symptoms












Notes and assumptions
As the questionairre 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.