Sticky Blood-Hughes Syndrome Support
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At last

I'm so happy we have finally managed to get my twin referred to St Thomas' after she was told it was good news that all her test results were negative at our local hospital, something I was told too many times! Think it might have helped that I was stubborn and took my letters from Dr K with us and made the Dr read them. He said seronegative is controversial but he would refer her, I've asked for her to be referred to Dr Hunt as that is who I think I am now under but I've always seen someone else.

Maybe we are getting their at last.


9 Replies

Hi It deffo pays to be persistent with Dr's, I have seen Dr Hunt myself today, and she is the only person who seems to understand what im talking about, I too have had my sister checked, have just found this site tonight, have been needing to talk to someone for what feels like ages.

Zoe :0)


Hi zoe

welcome and glad you found us.

Good news that you seen Dr hunt and that it's helped.

There are some great people on here who'le help as much as poss. Aps can be tough alone, is definately easier shared.

Hope you feeling well today.

Take care gentle hugs sheena xxxxxxxx :-) :-) :-)


Hi Zoe

Glad that you found this, I'm fairly new to it myself and only found it when googling regarding my daughters rash but there are loads of helpful and friendly people here who know so much :-) For me it is also 'nice' to see there are other seronegative people here so I know I'm not making it up!

My twin and I have had so many problems between us (many identical) that it can't just be a coincidence. Glad your sister has been check out too, did she go to St T's?

Speak soon



Hi rosemary welcome and so glad you found us, sorry to hear what brings you here tho. I'm not sero negative but there are many on here who are.

The family links with aps seem to be quite common, my dad, his sis, my mum, my mum's aunt, my cousin and possibly my daughter all have autoimmune conditions.

I'm glad your twin being referred to Dr hunt, many on here say she is fantastic, all the docs I've seen at st t's are too.

Hope all turns out well and you feelin ok today.

Take care gentle hugs sheena xxxxxxxx :-) :-) :-)


Hi Rosemary. Well done for being persistent. Good luck with the appointment, keep us informed of how it goes. Much love, Jane


Dr Hunt diagnosed me within 5 days in hospital after seeing numerous doctors over 9 years so she is the right person to see.


Well done for sticking to your guns.

It took me years for anyone to listen to me.

Dr K was the only one who believed there was anything wrong. I regard him most highly. He will stand up for you as well.

I recently saw him following two hospital admissions. He rang my GP personally and left three messages on my answerphone and an email.

Thank goodness for a doctor who actually cares.

Hope your sister gets an appointment at St. T's soon


Well done... as one myself who has been diagnosed by Professor H as seronegative Hughes.... but St T;s found nothing in tests, although they know my clinical history. This time around they did find Lupus.... but really I have had clinical signs and episodes since teenage years. It is all frustrating especially if you GP surgery will not modernize in reading materials! I have been my own detective and read every medical paper/book I can get my hands on to work out what is wrong with my wider family and myself. Good luck with your next stage. Mary F x


I am seronegative and was dx by Prof H. A recent first visit to St T which was not so good made me worry about this but having seen him again I have been told not to worry and that dx will not change.

Frankly I don't know what I would do without London Bridge who have been the most supportive place and Prof H the best doctor I have ever seen in my life - and I have seen many.

Having symptoms but continually getting negative results is such an emotionally draining experience. Doctors think you should be pleased that the tests are negative because it means you have nothing wrong with you but they can't understand that it therefore makes you feel awful as it does not explain why you feel so ill and you therefore want desperately for something/anything to be positive so you can shout at them "I told you so" and get medication that can make you feel better.

When this goes on for years you then start to doubt yourself and tell yourself well perhaps they are right and I am imagining it all.

Even after a Stroke they were telling me they had no idea why I had it so was it any wonder I was literally pulling my hair out with frustration!! To then find somebody who calmly puts all the crosses in all the boxes is like a Eureka moment of proportions I cannot even describe. Even though they are giving you an awful dx with implications that you don't want to think about.

Even now I visit my Stroke Consultant and he is still sceptical about the dx because he says there is no clinical evidence......but he will bow to Prof H opinion as he is the expert!!! Thats good of him!

Well done for sticking with it, sometimes you just got to dig those heels in!


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