Results from data received up to 30th May 2007
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
	655	100.00%
Gender
Female	580	88.60%
Male	75	11.40%
Ages in 10 year groups
Up to 30	107	16.28%
31 to 40	186	28.33%
41 to 50	213	32.48%
51 to 60	115	17.50%
61 and over	35	5.41%
Country
UK	112	17.09%
USA	448	68.38%
Poland	2	0.28%
Brazil	2	0.28%
Australia	30	4.56%
Canada	34	5.13%
India	2	0.28%
South Africa	2	0.28%
Spain	2	0.28%
Egypt	2	0.28%
New Zealand	4	0.57%
Italy	2	0.28%
Norway	2	0.28%
Jamaica	2	0.28%
Eire	2	0.28%
Philippines	2	0.28%
France	2	0.28%
Israel	2	0.28%
Information withheld on Country	4	0.56%
Number of Doctors before diagnosis (mean average)
Have you been diagnosed with MS	32	4.84%	28	4.27%	4	0.57%	12.50%
Have you been diagnosed with Lupus	129	19.66%	45	6.84%	84	12.82%	65.12%
Occular
Blurred or double vision	332	50.71%	0	0.00%	332	50.71%	100.00%
Visual disturbance	394	60.11%	239	36.47%	155	23.65%	39.34%
Visual loss	205	31.34%	136	20.80%	69	10.54%	33.66%
Retinal artery occlusion	32	4.84%	13	1.99%	19	2.85%	59.35%
Retinal vein thrombosis	21	3.13%	9	1.42%	11	1.71%	52.38%
Cardiorespiratory
Chest pain	332	50.71%	215	32.76%	118	17.95%	35.54%
Radiating arm pain	220	33.62%	138	21.08%	82	12.54%	37.27%
Shortness of breath	317	48.43%	218	33.33%	99	15.10%	31.23%
Cardiac
Insufficiency murmur	123	18.80%	65	9.97%	58	8.83%	47.15%
Myocardial infarction	88	13.39%	34	5.13%	54	8.26%	61.36%
Gastrointestinal
Abdominal pain	302	46.15%	200	30.48%	103	15.67%	34.11%
Abdominal distension	306	46.72%	196	29.91%	110	16.81%	35.95%
Abdominal migraine	91	13.96%	65	9.97%	26	3.99%	28.57%
Emesis (vomiting)	101	15.38%	67	10.26%	34	5.13%	33.66%
Right upper quadrant	82	12.54%	58	8.83%	24	3.70%	29.27%
Abdominal tenderness	88	13.39%	54	8.26%	34	5.13%	38.64%
Pulmonary
Respiratory distress	146	22.22%	99	15.10%	47	7.12%	32.19%
Tachypnea	99	15.10%	71	10.83%	28	4.27%	28.28%
Pulmonary embolism	125	19.09%	90	13.68%	35	5.41%	28.00%
Pulmonary hypertension	54	8.26%	26	3.99%	28	4.27%	51.85%
Peripheral Vascular
Leg pain	397	60.68%	261	39.89%	136	20.80%	34.26%
Leg swelling	284	43.30%	192	29.34%	91	13.96%	32.04%
Claudication	276	42.17%	166	25.36%	110	16.81%	39.86%
Digital ulcerations	69	10.54%	35	5.41%	34	5.13%	49.28%
Leg ulcerations	37	5.70%	22	3.42%	15	2.28%	40.54%
Cold-induced finger and/or toe pain	297	45.30%	198	30.20%	99	15.10%	33.33%
Bone infarction	213	32.48%	140	21.37%	73	11.11%	34.27%
Avascular necrosis	203	31.05%	119	18.23%	84	12.82%	41.38%
Limb swelling (DVT)	198	30.20%	144	21.94%	54	8.26%	27.27%
Peripheral edema	104	15.95%	58	8.83%	47	7.12%	45.19%
Decreased capillary refill	56	8.55%	30	4.56%	26	3.99%	46.43%
Decreased pulses	63	9.69%	34	5.13%	30	4.56%	47.62%
Decreased perfusion	39	5.98%	22	3.42%	17	2.56%	43.59%
Gangrene	13	1.99%	9	1.42%	4	0.57%	30.77%
Musculoskeletal
Bone pain	289	44.16%	181	27.64%	108	16.52%	37.37%
Joint pain	440	67.24%	286	43.59%	155	23.65%	35.23%
Cutaneous
Purpuric and/or petechial rashes	69	10.54%	30	4.56%	39	5.98%	56.52%
Livedo reticularis	54	8.26%	28	4.27%	26	3.99%	48.15%
Dusky fingers and/or toes	91	13.96%	58	8.83%	34	5.13%	37.36%
Blanching of fingers and/or toes	106	16.24%	73	11.11%	34	5.13%	32.08%
Purpuric lesions	43	6.55%	21	3.13%	22	3.42%	51.16%
Superficial thrombophlebitis	75	11.40%	43	6.55%	32	4.84%	42.67%
Vasospasm	147	22.51%	104	15.95%	43	6.55%	29.25%
Splinter hemorrhages	26	3.99%	17	2.56%	9	1.42%	34.62%
Peripheral infarctions	21	3.13%	13	1.99%	7	1.14%	33.33%
Skin ulcerations	21	3.13%	13	1.99%	7	1.14%	33.33%
Bruising	63	9.69%	30	4.56%	34	5.13%	53.97%
Neurological and Psychiatric
Syncope	101	15.38%	69	10.54%	32	4.84%	31.68%
Seizures	123	18.80%	77	11.68%	47	7.12%	38.21%
Headache (migraine)	472	72.08%	343	52.42%	129	19.66%	27.33%
Ascending weakness	256	39.03%	155	23.65%	101	15.38%	39.45%
Tremors	220	33.62%	134	20.51%	86	13.11%	39.09%
Memory loss	425	64.96%	226	34.47%	200	30.48%	47.06%
Problems with concentrating, reading comprehension, calculations (change in performance)	435	66.38%	241	36.75%	194	29.63%	44.60%
Stroke/CVA (cerebrovascular accident)	160	24.50%	103	15.67%	58	8.83%	36.25%
TIA	239	36.47%	138	21.08%	101	15.38%	42.26%
vasovasorum(or blood vessel) ischemia/infarction	144	21.94%	90	13.68%	54	8.26%	37.50%
Paralysis,	116	17.66%	65	9.97%	50	7.69%	43.10%
Abnormal movements	133	20.23%	71	10.83%	62	9.40%	46.62%
Multiple sclerosis-like disorder	261	39.89%	140	21.37%	121	18.52%	46.36%
Endocrine
Weakness	396	60.40%	230	35.04%	166	25.36%	41.92%
Fatigue	500	76.35%	300	45.87%	200	30.48%	40.00%
Arthralgia	200	30.48%	133	20.23%	67	10.26%	33.50%
Abdominal pain	144	21.94%	88	13.39%	56	8.55%	38.89%
Adrenal infarction/hemorrhage	63	9.69%	35	5.41%	28	4.27%	44.44%
Genitourinary
Hematuria (blood in urine)	103	15.67%	54	8.26%	49	7.41%	47.57%
Peripheral edema	119	18.23%	78	11.97%	41	6.27%	34.45%
Renal
Hypertension	129	19.66%	54	8.26%	75	11.40%	58.14%
Renal artery thrombosis	15	2.28%	6	0.85%	9	1.42%	60.00%
Intrarenal vascular lesions (scar tissue)	30	4.56%	11	1.71%	19	2.85%	63.33%
Hematuria (blood in urine)	99	15.10%	49	7.41%	50	7.69%	50.51%
Renal vein thrombosis	13	1.99%	4	0.57%	9	1.42%	69.23%
Pregnancy Related
Miscarriages (Number of Patients)	323	49.29%	323	49.29%	0	0.00%	0.00%
Premature birth (Number of Patients)	142	21.65%	106	16.24%	35	5.41%	24.65%
IUGR	56	8.55%	28	4.27%	28	4.27%	50.00%
Oligohydramnios	47	7.12%	32	4.84%	15	2.28%	31.91%
Chorea gravidarum	26	3.99%	15	2.28%	11	1.71%	42.31%
Placental infarction	69	10.54%	43	6.55%	26	3.99%	37.68%
Preeclampsia	101	15.38%	67	10.26%	34	5.13%	33.66%
Toxemia of pregnancy	75	11.40%	45	6.84%	30	4.56%	40.00%
Neonatal thromboembolism	21	3.13%	13	1.99%	7	1.14%	33.33%
Diagnosed APS during tests at pregnancy	286	43.59%	0	0.00%	0	0.00%	0.00%
Family History
Pregnancy related family history	160	24.50%	Relationship to pre or post diagnosis is immaterial
Family history of MI or stroke	104	15.95%
Family history of DVT, Phlebitis or PE	168	25.64%
Family History of Migraine, Reynaud's or TIA's	230	35.04%
Medical History
Use of Oral Contraception during tests at pregnancy	183	27.92%	Relationship to pre or post diagnosis is immaterial
Other long-term use of medication	328	50.14%
Vaccinations
vaccinations	511	78.06%	Relationship to pre or post diagnosis is immaterial
Trauma or Stress Related
Traumatic or stressful event prior to onset	481	73.50%	Relationship to pre or post diagnosis is immaterial
Other Symptoms
Back pain	30	4.56%
Pain in side of ribs (flank)	9	1.42%
Heat sensitivity	7	1.14%
Sun sensitivity	11	1.71%
Nasal ulcers	11	1.71%
Blood blisters in mouth	4	0.57%
Mouth ulcers	13	1.99%
Psoriatic Arthritis	4	0.57%
Muscle cramps	6	0.85%
Sinus problems	9	1.42%
Spontaneous bruising	7	1.14%
Thyroid problems (over/under active)	7	1.14%
Dizziness	28	4.27%
Constant headaches	26	3.99%
Notes and assumptions
As the questionnaire was specific in asking if a patient suffered from a symptom and if that 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), Aspirin or both 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 on treatment is little more than a figment of an over-imaginative mind, or the opinion of doctors who fail to follow their patients progress (or deterioration). For Miscarriages and premature births I have included the number of patients who reported them and not a number of actual instances. A majority of these events led to diagnosis as a result of tests instigated after one, or many, pregnancy related problems 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 relevant question and used only those that are not previously listed as part of the 'Other Symptoms' listing.