Sticky Blood-Hughes Syndrome Support
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Complex Diagnostic Route Ends !

Hello again, my son-in-law has had months of seeing different "experts" since a sudden hearing loss/tinnitus which I posted here with many helpful replies.

He began with a doctor he saw at The Portland Hospital who was very good and he started him on aspirin and referred him to a private haematologist for further tests.

She did a number of blood tests, diagnosed APS and put him on daily Fragmin injections while he waited for an NHS appointment with Professor Karen Breen.

He saw her 3 weeks ago and was not put off by the manner in which she conducted the consultation (fired questions at him whilst looking at her computer and typing) only stopping to look at him when she wanted to check his skin. He was told he had a rash which was a known sign of APS and he was to continue with Fragmin but she may change him to Warfarin later. More blood was taken and he was to return in 3 weeks.

He saw Karen Breen again this week and was told to stop everything straight away as his diagnosis was incorrect? He found this unbelievable to say the least.

My daughter is worried that everything was stopped so quickly. He felt unwell with an aching neck and migraine symptoms the next morning but seems ok at the moment.

None of this seems to make sense. They can't all be wrong can they, and is he still at risk of a clot? Especially as he has been told he has Factor V Leiden which is inherited from his mother's side.

Confusion all round.

3 Replies

Did Prof Breen say why she was taking him off of all medications and the diagnosis was wrong? Just because one lot of blood tests come back negative does not mean that a previous diagnosis is incorrect. If your son has had two previous positive tests 12 weeks apart then I'd struggle with this decision too. If he does not feel he has had a proper explanation then he needs to either write to her secretary and explain how he's feeling and ask for a telephone call or ask for a referral to Prof Beverly Hunt at Guys.


You are not alone in this sort of route to diagnosis, you must clearly ask for some answers, and he clearly need you as his patient advocate for the next appointment. MaryF



I'm sorry to read yet another patient is suffering in this way. I find it extremely concerning that the Dr who has advised to stop medication is on the list of recommended Drs for APS specialists. Did she not offer an explanation as to why she believed the diagnosis is incorrect or what the correct diagnosis is? I would definitely be fighting for them answers and questioning why one Dr diagnosed him and another removed the diagnosis.

Keep going until you get the answers you need to help your son-in-law get the best and most appropriate treatment.

Kelly x


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