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Criteria to Diagnose Antiphospholipid Syndrome/Hughes Syndrome


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Old 05-04-2004, 12:03 PM   #1
AngelicBrat
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Post Criteria to Diagnose Antiphospholipid Syndrome/Hughes Syndrome

Hello everyone,

If you have possible Lupus, then you are more predisposed to a syndrome called Antiphospholipid Syndrome. It can occur with Lupus or without, and is also known as sticky blood.

I have APS, and I was diagnosed by Dr. Graham Hughes in London England. I travelled to see him from Canada!

Antiphospholipid Syndrome (APS) also known as Hughes Syndrome was first found in patients with Lupus in the 1980's by Dr. Graham Hughes- a Rheumatologist in London England. Later on, it was discovered that APS can occur WITHOUT LUPUS. They call it Primary APS when it occurs without Lupus, and secondary when it occurs with Lupus.

Dr. Hughes found that a lot of patients with symptoms of migraines, fetal loss, strokes, and vision loss etc had a blood disorder that made the blood "sticky". Now, they have isolated some antibody blood tests for someone with the symptoms and history of APS. First, let me review the symptoms with you.

Headache or migraine
visual problems (optic nerve swelling, 'optic neuritis')
Clots e.g. deep vein thrombosis (‘DVT’)
Strokes or TIA's
Memory loss
Seizures, ‘multiple sclerosis’ features
In pregnancy, recurrent pregnancy loss (miscarraige)
Skin - Cold Circulation (livedo reticulitis- a webbed pattern on the legs and/or arms)

You don't have to have ALL of these symptoms, just some of them.

If you have had these symptoms, with NO explanation given to you, then its worth it to get checked out.

The Diagnosing Blood Tests:

I must add first of all that you can have APS without positive blood work! They call it "sero-negative APS" but it must be treated as aggressively as sero-positive. The reason they feel that people may slip through the blood work "loop hole" is that medical tests are not an exact science, there are people that do fit the clinical criteria but don't have the blood work positive at the time. Blood work can change from day to day, positive to negative!

The Blood tests:

Anti-cardiolipin Antibodies:

Sometimes referred to as Antiphospholipid. It is positive in 80% of cases
Higher Levels = Higher risk of Thrombosis (clotting)

Lupus Anti-coagulant (LA):

Positive in 30-40% of cases
Cannot be used if patient is on warfarin (this is a blood thinner)

These tests should be done twice, within 6 weeks of each other if positive. If they are positive twice, and you have the symptoms then you probably have APS!

Treatment for APS:

The reason why the blood has a tendancy to clot is because it is "sticky". The goal of therapy is to thin the blood out. There are currently 3 main medications – aspirin, heparin or warfarin. Your doctor will decide which you need by how severe your symptoms are and have been in the past.

It really is worth getting tested for you guys. It can help so much when the blood is thinned. I have blurred and double vision, history of stroke, TIA's and I also have Lupus. SO for me its a double whammy. I will answer questions if you have them here in this forum if you like Hope this helps all of you who have suffered from TIA's and may have this Syndrome. Awareness is everything! Take care and please ask questions if you need some help to understand this syndrome. Knowledge is key!

~AngelicBrat

 
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