Has anyone else felt like they have b... - Hughes Syndrome -...

Hughes Syndrome - APS Support
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Has anyone else felt like they have been leftin limbo?


I saw Rheumy on Friday, unfortunately not the one I usually see, I walked into consultation room to find 5 junior docs also in the small room (not good for someone who has anxienty and claustraphobia). Rheumy asked me why I I had been referred, told me I had to have 2 blood tests to confirm I had APS, told me I was on the medications I needed and promptly discharged me. He hadn't even looked at my file. I feel as though I have been pushed aside and patted on the head like a good little girl. No after care at all. I tried to call the Rheumy that I had seen originally but he was not available. I asked his secretary to get him to call me saying that I was not happy with my consultation and that I will be making a complaint to PALS. Does anybody think I am justified in doing this and has anyone else been left out on a limb like this. I am extremely upset

6 Replies

I can sympathise with you. I have has two positive blood tests for APS also and I am currently on aspirin as I haven't had any DVTs or miscarriages. I do however suffer with extreme fatigue, aching joints, headaches (made worse by any exercise) migraines, light headedness, memory loss, hoarse voice, loss of hearing, cough/wheezing, lose words and mouth ulcers. The rheumatologist said I cant explain the headaches but you are taking aspirin for APS so that's sorted, see you in a year. Like you I went expecting a lot of help and advice but came out feeling like a hypochondriac!


I can absolutely agree with you. This time last year I had a referral from local hospital for St T on-going treatment and support but within three months I had been discharged back to GP feeling very very low, a hypochondriac and with no on-going support or treatment plan.

In hindsight it was the best thing that could have happened as my poor experience has been picked up by a smashing GP who I had only seen once or twice at most before. This in conjunction with a trip to the Professor was my saviour. I have definitely taken the scenic route! I truly feel that some doctors just don't take into account the impact of how they interact with patients and inevitably they are so busy that they want to crack on and get to the next patient. We, on the other hand, hold their knowledge and expertise as the pot of gold at the end of the rainbow. The pot that will either make or break us in terms of treatment.

So now, to answer the question, I don't feel in limbo any more as the GP and Professor have me back on track but if you'd have asked me at the start of this year, I'd have definitely said a big, fat yes.

Which hospital are you being treated at ?


There is also the option of filling in feedback via NHS Choices or Patient Opinion, which then is read publicly whether you are do it anonymously or by your name. This sounds very poor, where were you treated. Mary F x

in reply to MaryF

I was treated at Queens hospital, Romford, Essex. Thank you for reply

in reply to jackjack2

Hi there - would you have the name of an APS specialist we could recommend to other patients at the Queen's Hospital? We don't have anyone listed in Romford yet: hughes-syndrome.org/self-he.... We always write to the specialist to ask their permission before they're included in the directory.

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