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Hughes Syndrome APS Forum

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Bluma profile image
7 Replies

My doctors Not familiar with Hughes disease.

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Bluma profile image
Bluma
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7 Replies
HollyHeski profile image
HollyHeskiAdministrator

Hi, I have re read your previous posts and understand you are struggling with various problems.

You really need to talk to a doctor that specialising in APS, with our sticky clotting blood visiting every organ in our body, we need someone who can look at the whole picture, joining all the dots up.

Please try and find a Hughes/APS specialist local to you?

Bluma profile image
Bluma in reply to HollyHeski

There are times when you have to take a breath. And when you have the top docs from Weill Cornell and MSKCC. I wonder about the next guy.

MaryF profile image
MaryFAdministrator

Hi there, remind me again here you are located and we will try and help if we can. MaryF

That is very true .. my primary doctors office nurse told me I was the first case they have ever had ..that does not make me feel too confident

I'm glad I only see my specialist for this I am not trusting anyone with answers when they don't know themselves

Stereolover profile image
Stereolover

Neither was the GP I had. She sent me for the wrong blood tests. I changed GP’s not long afterwards and when the results came through of 3 separate tests I spent 5 days in hospital under the care of Prof D’Cruz.

Bluma profile image
Bluma

My NEURO is top notch as is my hemotogist. I have so many different docs it makes me crazy!