Sticky Blood-Hughes Syndrome Support
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difficult to concentrate

Hi,

I had a APS catastrophic in 2006, I fall on the street in Paris with clots in all organs.

Today, I'm living in Austin, Texas.

Since two weeks, I have a huge headache and I can't reading anymore without to causes this pain.

When I had the headache, my eyes are painful too.

Actually, I'm really scared about the headache and the consequence.

EDIT: Cerebral venous sinus thrombosis in 1999, the professor and neurologist Bousser diagnosed the APS and CVCT

fr.wikipedia.org/wiki/Marie...

Thank you

19 Replies
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Sorry to hear you are not feeling well!

May I ask if you have been diagnosed for APS (Antiphospholipidsyndrome) ?

If you have APS who diagnosed you and were do you live? In that case this site may help you.

My best wishes to you from Kerstin in Stockholm

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I edited my post, I had an APS, I wrote it in french (SAPL).

I live in the US, Austin, TX.

Thank you

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Hi

Who is managing your APS, as you should be asking them about your headaches.

What medication are you taking for APS?

Dave

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Hi Dave,

Nobody's managing it, I completely lost in the US, is very different from France, I have a heart doctor and the family doctor.

In Paris the professor Marie-Germaine Bousser was take care about me, she was one of the best specialist for the stroke and an amazing person.

fr.wikipedia.org/wiki/Marie...

lemonde.fr/sciences/article...

I'm taking

coumadin: 5mg

baby aspirin: 1

one beta blocker pill and one one pill for the cholesterol.

Before I took one Previscan per day, since four years they gave me the Warfarin/Coumadin.

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Hi

You need to be under the care of an experienced APS consulatant.

Dave

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I don't really find in Austin :(

I will see a hematologist.

I wonder if is necessary to go to emergency, because that cost $500 here (I know is insane).

I scared, if I have a stroke, that can be fatal, but with the Coumadine can I have a stroke?

I don't want to die :)

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You need to see your local Dr and ask to be referred to an APS Specialist, as soon as possible.

You are taking Coumadin so who is monitoring your INR?

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I monitoring the INR at home, I must to be between 2 and 3.

Since 4 month is higher and I never in the range.

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Many APS patients find that they need an INR between 3 & 4 to feel reasonably well.

Even with self monitoring you should have your INR checked by a Dr/Lab at regular intervals.

Dave

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Hi Xavart,

I do agree with Dave as the monitoring is exstremely important that you keep your INR high enough to avoid a stroke that is.

I also take 5 mg and the same drugs like you.

As Dave is saying go see your family doctor or call the heartdoctor to get a referral.

Kerstin

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I am very worried that you are taking Coumadin and you are not having your INR monitored - unless I am misunderstanding you. I do get that medical attention in America is expensive however as you say you do not want a Stroke or to die and with your history you do need to be monitored. You should not just be taking that medication and not have your blood levels checked.

if your symptoms are sudden and acute you should go to the emergency room if not then please call your normal Doctor and impress upon them that you need to be seen and your INR checked ASAP.

Good Luck. I hope things improve for you soon.

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you might call the University of Texas Health Science Center in San Antonio (210) 562-9000 and ask them if they know anyone in the Austin area to recommend. Email Robin L Brey brey@uthscsa.edu

Donald Dudley dudleyd@uthscsa.edu

These people seem to be the ones to contact or their research associates. I would try to call either or both. The number is the general number for the hospital

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I will, thank you.

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If you are a student or working for a college or university, then they should be able to help you access a specialist to treat your APS. If you work for a semi large company they should have insurers or medical advisers who may be able to help. Medical care in the US is complicated. Half the battle is just knowing who to ask.

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Hi, I do feel you should have more detailed care behind you, please look at some of the names on this list: apsaction.org/

MaryF

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I have a home near Austin, TX and was diagnosed with APS 13 years ago. When I am in Austin, I see a Hematologist by the name of Dr. Punit Chadha. He is located at 4101 James Casey Street in Austin, TX. Phone number is 512-447-2202. He is very open to self testing and listens carefully and is compassionate. I am not his only APS patient but as you know, Hematologist mostly work in Oncology not APS. He's my top pick for APS in Austin. I hope this helps.

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Thank you

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How are you doing now, I realize this is an old post?

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xavart how are you doing now?

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