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Old 12-28-2005, 05:20 AM   #1
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Tear_Drop HB User
How are you diagnosed?

Hi all

I was wondering if ANYBODY can help me. My sister has Hughes Syndrome, and as a result of this has miscarried twice. Now I am also pregnant, unplanned so I didn't get tested for anything before hand. Anyway my midwife has only now told me that they want to do further test on me to see if I carry anything that could trigger me getting what my sister has!

We don't have the same father and so far so good, but i suppose they just want to make sure!

I just wanted to know what tests etc they do to diagnose you as I am 25ish weeks pregnant and I'm worried about everything!! I was just wondering if it was just a blood test or is there more to it.

I also live in the UK - so if there is anybody on here from the UK, your input would be much appreciated.

Thanks

Lxx

Last edited by Tear_Drop; 01-04-2006 at 10:19 AM.

 
Old 12-28-2005, 11:15 AM   #2
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goldenwings HB User
Re: How are you diagnosed?

Hello Tear Drop,

Firstly may I give you and your partner my heartfelt congratulations on your new little person. Now may I welcome to a wonderful supportive group of people. I am in the UK and was for a long time a patients of Graham Hughes who, as you know the syndrome is named after. It is also called - more commonly known as - APS or antiphospholipid syndrome as you no doubt know. One thing I would like to point out which is that it is not only patients with lupus who can have hughes syndrome/APS. Sometimes this can be worrying, thinking that because a person has APS they also have lupus.

I am not medically qualified but can give you the following information that I have obtained in my research into lupus, as I have had SLE for over 30 years.

The diagnosis depends on the history, the examination, and special tests. The doctor will ask about clotting problems in the past (any history of clots in the leg or lung), previous strokes or heart attacks (and whether they occurred at young ages), less specific clues such as headaches, migraine, memory loss, and confusion. Women will be questioned about past pregnancies, and whether there were any complications. They will be asked specifically about any miscarriages, and at what stage of pregnancy they occurred.

A lacy, net-like, red rash known as 'livedo reticularis' (some patients call this corn beef skin!), is often found in antiphospholipid syndrome, particularly over the wrists and knees.

A simple blood test can detect the 'antiphospholipid antibodies'. Other blood tests can check for underlying conditions, such as lupus. The doctor may also assess other risk factors for thrombosis - by measuring the patients blood pressure to rule out hypertension, checking their glucose levels to rule out diabetes and measuring cholesterol levels.

So all in all, yes it is a blood test regime but also history and family history will be taken to determine if you have or will have a problem. The earlier it is detected, the easier it will be to treat. The treatment is simple too, nothing dramatic.

We are not allowed on this site to give web addresses or links out, but if you key in Hughes Syndrome or indeed APS, you will have access to lots of information. Then if you feel you have more questions to ask, or any type of help or information, please do come and ask whatever questions you feel you need to ask. There will always be someone here who will do their best to be of help to you. You can be assured of so much support and understanding.

If I can help further, please let me know. Once again congratulations on your pregnancy. Take care.

goldenwings
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I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.

Last edited by goldenwings; 12-28-2005 at 11:18 AM.

 
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Old 12-28-2005, 06:02 PM   #3
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Re: How are you diagnosed?

Dear Tear_Drop,

At the very top of the Board are some "sticky posts" = permanent posts with information. There's one on Antiphospholipid/Hughes, plus several on lupus. You may want to scrutinize all three.

That's about all I can add right now to the good info GW just posted---other than to say WELCOME to you. I hope all continues well with your pregnancy and that the remaining months fly by uneventfully for you.

Sincerely, Vee (Dx'ed with the SCLE "subset" of lupus, without APS)

 
Old 12-29-2005, 06:31 AM   #4
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Join Date: Aug 2005
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Tear_Drop HB User
Re: How are you diagnosed?

Thank you both very much.!!

I know my sister has had a lot or trouble coping with her illness, and I will deff tell her to come here to speak to you all - as I think she would benefit from it!!

Well I am seeing the consultant within the next week so I will update you all as to how it goes.

Thank you all again and I wish you all a very happy New Year!

 
Old 12-29-2005, 03:17 PM   #5
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Re: How are you diagnosed?

Dear Tear_Drop, You may also find the very first "sticky post" very useful. There's a link to HSS. When you get there, type "lupus" in the search box. You'll get a whole list of article links, incl. at least one extensive article on Hughes' syndrome.

And New Year's wishes back to you, too---and to your sis!

Take good care,
Vee

 
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