World Survey of APS Patient Symptoms

Conducted for APLSUK@yahoogroups.com   

Name (will not be published)


Email (will not be published)


What is your gender? (M or F)?


What is your age (Optional, but would assist in the overall impact of the published results)?


Where do you live (county, state or province and country)?

How many doctors did you consult from the first APS symptom, miscarriage or clotting event to being diagnosed with APS. (Many have changed doctors or consultants to find better, more APS orientated doctors. Please include all doctors seen )

MS diagnosis

Have you been diagnosed with MS

Yes

No

If yes was it prior to  APLS diagnosis

SLE (Lupus) diagnosis

Have you been diagnosed with Lupus

Yes

No

If yes was it prior to APLS diagnosis

Occular

Blurred or double vision

Yes

No

If yes was it prior to diagnosis

Visual disturbance ("wavy lines," "flashing lights")

Yes

No

If yes was it prior to diagnosis

Visual loss (field cuts, total vision loss)

Yes

No

If yes was it prior to diagnosis

Retinal artery occlusion (only if officially diagnosed)

Yes

No

If yes was it prior to diagnosis

Retinal vein thrombosis (only if officially diagnosed)

Yes

No

If yes was it prior to diagnosis

Retinal artery occlusion (only if officially diagnosed)

Yes

No

If yes was it prior to diagnosis

Retinal vein thrombosis (only if officially diagnosed)

Yes

No

If yes was it prior to diagnosis

Cardiorespiratory

Chest pain

Yes

No

If yes was it prior to diagnosis

Radiating arm pain

Yes

No

If yes was it prior to diagnosis

Shortness of breath

Yes

No

If yes was it prior to diagnosis

Cardiac

Insufficiency murmur of aortic, mitral valve (endocarditis) (only if officially diagnosed)

Yes

No

If yes was it prior to diagnosis

Myocardial infarction (Chest pain, diaphoresis (sweating))

Yes

No

If yes was it prior to diagnosis

Gastrointestinal

Abdominal pain

Yes

No

If yes was it prior to diagnosis

Abdominal distension (bloating)

Yes

No

If yes was it prior to diagnosis

Abdominal migraine  see here for details

Yes

No

If yes was it prior to diagnosis

Emesis (vomiting)

Yes

No

If yes was it prior to diagnosis

Right upper quadrant tenderness, hepatomegaly (Enlargement of the liver) Budd-Chiari syndrome, hepatic small vessel thrombosis, hepatic infarction)

Yes

No

If yes was it prior to diagnosis

Abdominal tenderness (mesenteric artery thrombosis)

Yes

No

If yes was it prior to diagnosis

Pulmonary

Respiratory distress

Yes

No

If yes was it prior to diagnosis

Tachypnea (rapid breathing)

Yes

No

If yes was it prior to diagnosis

Pulmonary embolism [PE]

Yes

No

If yes was it prior to diagnosis

Pulmonary hypertension

Yes

No

If yes was it prior to diagnosis

Peripheral vascular

Leg pain

Yes

No

If yes was it prior to diagnosis

Leg swelling

Yes

No

If yes was it prior to diagnosis

Claudication (limping or occasional limping)

Yes

No

If yes was it prior to diagnosis

Digital ulcerations (fingers, toes and can include hands and feet in this context due to extended vein/arteries into surrounding area)

Yes

No

If yes was it prior to diagnosis

Leg ulcerations 

Yes

No

If yes was it prior to diagnosis

Cold-induced finger and/or toe pain

Yes

No

If yes was it prior to diagnosis

Point tenderness to palpation of bone or joints (bone infarction)

Yes

No

If yes was it prior to diagnosis

Pain on range of motion of joints without arthritis (avascular necrosis)

Yes

No

If yes was it prior to diagnosis

Limb swelling (Deep Vein Thrombosis - DVT)

Yes

No

If yes was it prior to diagnosis

Peripheral edema (DVT, renal vein thrombosis)

Yes

No

If yes was it prior to diagnosis

Decreased capillary refill (arterial thrombosis/vasospasm includes collapse of vein)  

Yes

No

If yes was it prior to diagnosis

Decreased pulses (arterial thrombosis/Vasospasm)

Yes

No

If yes was it prior to diagnosis

Decreased perfusion (arterial thrombosis/vasospasm)

Yes

No

If yes was it prior to diagnosis

Gangrene (arterial thrombosis/infarction)

Yes

No

If yes was it prior to diagnosis

Musculoskeletal

Bone pain

Yes

No

If yes was it prior to diagnosis

Joint pain

Yes

No

If yes was it prior to diagnosis

Cutaneous

Purpuric and/or petechial rashes

Yes

No

If yes was it prior to diagnosis

Persistent or transient lacy rashes of livedo reticularis

Yes

No

If yes was it prior to diagnosis

Dusky fingers and/or toes

Yes

No

If yes was it prior to diagnosis

Blanching of fingers and/or toes

Yes

No

If yes was it prior to diagnosis

Purpuric lesions 

Yes

No

If yes was it prior to diagnosis

Superficial thrombophlebitis

Yes

No

If yes was it prior to diagnosis

Vasospasm (ie, Raynaud phenomenon)

Yes

No

If yes was it prior to diagnosis

Splinter hemorrhages (periungual, subungual)

Yes

No

If yes was it prior to diagnosis

Peripheral infarctions (digital pitting) 

Yes

No

If yes was it prior to diagnosis

Skin ulcerations (eg, leg ulcers)

Yes

No

If yes was it prior to diagnosis

Bruising (associated with thrombocytopenia)

Yes

No

If yes was it prior to diagnosis

Neurologic and psychiatric

Syncope 

Yes

No

If yes was it prior to diagnosis

Seizures

Yes

No

If yes was it prior to diagnosis

Headache (migraine)

Yes

No

If yes was it prior to diagnosis

Ascending weakness

Yes

No

If yes was it prior to diagnosis

Tremors

Yes

No

If yes was it prior to diagnosis

Memory loss

Yes

No

If yes was it prior to diagnosis

Problems with concentrating, reading comprehension, calculations (change in performance)

Yes

No

If yes was it prior to diagnosis

Stroke/CVA (cerebrovascular accident)

Yes

No

If yes was it prior to diagnosis

TIA

Yes

No

If yes was it prior to diagnosis

Paresthesia, polyneuritis or mononeuritis multiplex (vasovasorum(or blood vessel) ischemia/infarction)

Yes

No

If yes was it prior to diagnosis

Paralysis, hyperreflexia, weakness (transverse myelitis, Guillain-Barré syndrome)

Yes

No

If yes was it prior to diagnosis

Abnormal movements/Movement disorders - Choreiform tremors (cerebral, cerebellar, basal ganglia infarction)

Yes

No

If yes was it prior to diagnosis

Multiple sclerosis–like disorder (Not sure what the medical profesion mean by this as it could be all the other items on this list anyway. I suppose we should all answer yes to this)

Yes

No

If yes was it prior to diagnosis

Endocrine

Weakness

Yes

No

If yes was it prior to diagnosis

Fatigue

Yes

No

If yes was it prior to diagnosis

Arthralgia

Yes

No

If yes was it prior to diagnosis

Abdominal pain (Addisonian features)

Yes

No

If yes was it prior to diagnosis

Progressive stiffening of pelvic and thigh muscles with flexion contractures associated with adrenal (kidney) insufficiency (adrenal infarction/hemorrhage)

Yes

No

If yes was it prior to diagnosis

Genitourinary

Hematuria (blood in urine)

Yes

No

If yes was it prior to diagnosis

Peripheral edema

Yes

No

If yes was it prior to diagnosis

Renal (kidney)

Hypertension

Yes

No

If yes was it prior to diagnosis

Renal artery thrombosis

Yes

No

If yes was it prior to diagnosis

Intrarenal vascular lesions (scar tissue)

Yes

No

If yes was it prior to diagnosis

Hematuria (blood in urine)

Yes

No

If yes was it prior to diagnosis

Renal vein thrombosis

Yes

No

If yes was it prior to diagnosis

Pregnancy-related history

Miscarriage

If yes was it prior to diagnosis

Premature birth

Yes

No

If yes was it prior to diagnosis

IUGR

Yes

No

If yes was it prior to diagnosis

Oligohydramnios

Yes

No

If yes was it prior to diagnosis

Chorea gravidarum

Yes

No

If yes was it prior to diagnosis

Placental infarction

Yes

No

If yes was it prior to diagnosis

Preeclampsia

Yes

No

If yes was it prior to diagnosis

Toxemia of pregnancy

Yes

No

If yes was it prior to diagnosis

Neonatal thromboembolism 

Yes

No

If yes was it prior to diagnosis

Was Diagnosis made during tests at pregnancy

Yes

No

 

Family history
Family history of frequent miscarriage, premature birth, IUGR, oligohydramnios, chorea gravidarum, placental infarction, preeclampsia, toxemia of pregnancy, or neonatal thromboembolism 

Yes

No

Unknown

If yes was it prior to diagnosis

Family history of MI or stroke in persons younger than 50 years  

Yes

No  

Unknown

If yes was it prior to diagnosis

Family history of DVT, phlebitis, or pulmonary embolus 

Yes

No

Unknown

If yes was it prior to diagnosis

Strong family history of migraine, Raynaud phenomenon, or TIAs

Yes

No

Unknown

If yes was it prior to diagnosis

Medication history
Use of oral contraceptives at the time of a clinical event.

Yes

No

If yes was it prior to diagnosis

Other long-term use of medication

Vaccinations received

Was there any traumatic stressful event that occured in the six months prior to diagnosis

Other Symptoms

 

Physical: Physical findings are specific to the affected organ and can involve any organ system. Catastrophic antiphospholipid syndrome is a multisystem failure secondary to thrombosis/infarction and has a picture of microangiopathy on histology.

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