Sticky Blood-Hughes Syndrome Support

so fed up

last week saw my consultant at local hospital what a waste of time, all hes concerned about is my high blood pressure, wnich only seems to be high when i visit him. told him i have been once to st thomas for a blood test and will have to go back for repeat test, he doesnt agree with me that i may have aps, as i dont have all the symptoms, but i have so many of them and feel so unwell,just because i dont have the rash on my skin and i havent tested positive for lupus. why wont he listen to my symptoms? just hope st thomas come up with a diagnosis soon so i can get some treatment and put a name to the illness i believe i have. just want my life back and also would be nice to prove him wrong.

17 Replies

Hi there, this sounds a familiar route for diagnosis at times. Thankfully you have a foot in the door of St Thomas' They will hopefully help you and re educate those connected with your care as and where necessary, which will also hopefully smooth out any communication issues. As somebody who has 'seronegative' APS and no lupus, however a clinical diagnosis of APS only, as I fail blood tests. I understand! It will get better. Do take a detailed list of bullet points of symptoms and a history of events. It is easy to leave something out when there is so much stress around appointments. The best of luck. Mary F


Hi hon

Sorry to hear you having such a terrible time, sadly your story is not rare, you are well on the way with st Thomas`s doing tests though. I had similar with my first rheumy, and don`t they make you feel like you making it all up. But you know your body and how you feel.

I took a diary of daily symptoms, however small, A list of questions and a letter detailing all symptoms, health problems from childhood (glandular fever, migraines, etc all relevent) and the impact all of this is having on my life. Plus any previous test results you can get (ask gp, consultant for copies) they will provide them.

As Mary above says it is possible to be negative for all tests and still be diagnosed with APS and or Lupus, something that many Gp`s and some Rheumys have a problem with.

Hang in there, you will get there, can be a long and stressful road to diagnosis and the right treatment.

I hope your appointment with Tommies is soon and provides some answers for you.

Take care gentle hugs Sheena xxxxx Jessielou xxxxx :-) :-) :-)


well - jess i see my rheumy in the morning, i hope for better results than you got from your 1 st. im going up with all my paper work . that pile is 4 inches thick, hope doc is a fast reader ? ha. they have quite alot of my info already , so lets hope for the best, i know i will just turn you lose on him , you and kristina you guys are a pair that would beat a full house . will let you know what i find out be well alll jet


hi jet

hope all goes well for you, good to give rheumy some reading!!

Scary thought jet but awful long way to travel to abuse your rheumy, although would gladly do it if they not listen, Kristina this ones on you hon!!!

Joking aside good luck hon

Take care gentle hugs Jessielou xxx Sheena xxx


Come over for a visit Jessielou- you always have a place to stay with me! Jet won't know what hit him to get us both on the same continent! :0


Hey Jet, will be thinking of you all day and hoping your appt goes well. You we got your back, but I doubt you need it- you are plenty fiesty on your own. If I do have to make the trip, I will be bringing plenty of cans of Whoop *ss with me!


That would be scary lol


alan i was dia, 2.5 years ago a.p.s. i have on this site about 2.5 months have read a lot of peoples symtoms, but in no way do i have all. i realy dont believe that you would have to have all. you got to bring the doc paper work like jess said, thats some good advise jet


Hi Hon

I didn`t have the rash at time of diagnosis either. You don`t have to have em all!! none of it would be better!!! we can dream eh?

We all have times when it gets us down, come here have a moan, rant , ask questions, thats what we here for.

Keep pushing hon

Take care gentle hugs Jessielou xxxxxx Sheena xxxxx :-) :-) :-)


Hoping things go better for you! Don't stop until you get answers, even if it may not be APS but something that is similar. Hopefully you will also be feeling better very soon, too! Please keep us posted as to what's going on with you.


Keep going you will get there in the end. Good luck

Karen xx


thanks everyone glad to know that when i tell my neurologist that ive heard that you dont have to have all the symptoms and positive blood tests im not taking alot of bull. luckly ive been to st thomas once for blood test and im due back there on the 15th so really really hope that they can shed some light on what is wrong with me.


Hi hon,

Fighting talk where I come from!!! Just what you need. No more bull!!

Glad you spirits lifted hon.

Going st thomas's right way.

Keep pushing hon.

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

Good luck on the 15 th!!!!!! :-) :-) :-)


Hi Alan,

I see you are getting sound advice from these lovely ladies and i would agree with all they have said !!! and it is a tough road and St Thomas will soon smooth some of the rough out and get you some answers but i would also contact Kate from the Hughes Foundation she may be able to give you info to give the doc .



stick in there !! St Thomas will sort you out don't worry - you have to be very persistent in this game-You know yourself when your body is not well- I knew something was not right and all these years I have been diagnosed with this that and the other by my GP and specialists and if it was n't for St Thomas I might not have been here today !!!!! They have been fantastic especially my consultant - He is a genius !!!!


Let us know how you get on ! All the best and hope you get some answers-it took me years !!!!!


Same as everyone else has said - Don't give up!! Someone will have an answer you just have to find them! Not sure if i mentioned it before, it's a good idea to keep a diary of how you feel because then you can remind yourself which symptoms came up with which others and it may help to join the dots.

Good luck!



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