Confusion over diagnosis

[rafael]

Hi everyone,

I have seen another rhuematologist that is not my usual, who now says that my symptoms are not lupus even though my blood tests all point to lupus. He has taken me off Azathiaprine and is talking about CBT sessions! Meanwhile my symptoms are all still there and I am very upset and confused at this consult. Has anyone else had this experience?

[lupus-support1 Administrator]

Dear rafael,

Apologies for the delay but I have been away for the last few days.

I am sorry to read your distress. I can comment that what you describe is not uncommon. Many rheumatologists are not trained in lupus and IMHO, I think you need to see a lupus specialist who will conform the diagnosis or explain to you what is happening.

If you are in the UK, there are two choices. First, get your GP to refer you to St Thomas' Hospital - who have a Lupus Clinic and ask to be seen by Dr David D'Cruz who is the head of this unit.

If you can afford one private appointment, I recommend you see Professor Graham RV Hughes at the London Bridge Hospital where he runs the Lupus Clinic. Dr David d'Cruz is also there and was trained by Dr Hughes. Dr Hughes is the clinician who first identified the antiphospholipid antibody (Hughes) syndrome.

Finally, join the LuPUS Message board where there are many members who have a similar experience.

With good wishes,

Ros

[rafael]

Hi Ros

How do I get into the message boards? Do I need to join again?

Thanks

Rafaeli