Sticky Blood-Hughes Syndrome Support

Lupus and aps

Well I went to see the rubbish haemotologist last week as I had an appointment and needed treatment for the joint pain I'm getting (the good haemotologist appointment is not for another month and I couldn't carry on with this pain for another month) the haemotologist prescribed me codeine phosphate and decided to refer me to a rheumatologist for added tests, I always request a copy of the clinic letter sent to my address and I am so glad I do this as reading the letter it states that in my initial blood test (which was in November 2013) I had a positive anti nuclear antibody screen after panicking and thinking oh god what now it turns out this means I tested positive for lupus, I've read up on it but still don't know what to expect now, to be honest I'm a little bewildered and confused as to why this was never mentioned to me but yet this is another trigger as to why I could've developed tue dvt I had, I am now losing faith in my care via the hospitals very rapidly :(

6 Replies

It is always very frustrating to see in black and white that vital pieces of your medical care have not been properly assessed with joined up thinking. Your GP or other professionals do need to refer you to somebody with Hughes Syndrome/APS knowledge, the list at the charity covers most areas of the UK! MaryF


Thank you Mary, it is very frustrating as it seems like I'm putting my whole life in the hands of people who have no idea what they are treating I'm not fond of telling people how to do their jobs but with this hospital it really looks like they have absolutely no clue on the illness and are doing nothing to find out about it and how best to help me, the appointment with the new hospital and new haemotologist cannot come quick enough for me


Hi Bevjane.

I agree with Mary.

Where are you from?



I'm from Newcastle upon Tyne think my nearest specialist is in Darlington which is quite a travel for me, I just hope when I go to this new hospital the doctors there are a bit more understanding of Hughes and Lupus


I have added the list of specialists up on the top right hand side of the screen in pinned posts. Darlington is the Hospital mentioned but it would be worth it to see the right Dr. Have a look and see if anyone else would do?


Thank you for that :)


You may also like...