So i am 22 years old. My mum and my aunt both have hughes syndrome. I have had all 3 blood tests done all three came back slightly abnormal but they are saying i don't have it? The only reason i know they were abnormal is because i looked at the screen then had to ask!! What does this mean?
I have all over body aches and pains had a terrible pregnancy in 2011 with my son, was told i had sticky blood then. I need some advice people they keep telling me there is nothing wrong but i know there is. No one is in this much pain and discomfort for no reason....
Despite a detailed explanation of hughes and family history off my mother in America they still won't do a thing.
What do you all think?
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Jaide_selby
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What you are going through is not unusual, unfortunately.
Go to the HSF website and print off lots of information and give it to your Dr. and ask (demand your rights if necessary) to be referred to a specialist; Kate at the HSF will be able to help you with suitable consultants in your area.
You could have aprivate consultation with Prof Hughes or one of his team at the London Lupus Centre but you will have to pay for that. If you would like that then you can phone them for an appointment, speak to Kim, she is very helpful.
Let us know how you get on and thank you for setting your location; that helps us to help you.
I have tried all that they just keep telling me its all in my head. Emailed the Hospital in London and had a message back which i also gave them and they didnt do anything with they ordered the tests but then never gave me the results... what is the point?
I would make an appointment with a rheumatologist or a hematologist (blood specialist). It is important to know that you can be seronegative, which means the blood test won't show you have it. I have a doctor who researches APS and he has told me that APS runs in families. I had blood tests several times throughout the years and nothing showed up. It took me 30+ years to find out what my problem was after I had several small clots on both lungs. I have a friend who is seronegative, but she is being treated for APS. She had pre-eclampsia when she was pregnant and almost died. She also had an abdominal blood clot. She is being treated with Coumadin and Plaquenil now. Plaquenil helps with the pain and adds some protection against blood clotting. You have to be your own advocate. Bring someone else to the appointment with you. Let us know how you do. Good luck.
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