I went for my very first Haematology appointment this week and I have left feeling pretty positive - for the first time in ages I feel I am being taken seriously!
My consultant said that they believe that there is definitely something amiss and have ordered blood tests (they took 9 bottles in total!) and ordered a full body CT or MRI scan and then I am to go back in 8 weeks to discuss the results and next steps.
I have been told that I will now be under the Haematology centre for life with yearly appointments as a minimum and I can call up whenever I have question or arrange an appointment if I need to see them. My consultant mentioned a card to me to state that I have a rare blood disease with their contact details on so that if I am ever admitted to hospital the hospital staff can call them directly to discuss any changes to my care.
I feel that I was told so many things that I forgot them all! Has anybody else got one of these cards? and is this most peoples experiences I feel like they haven't confirmed a diagnoses for a specific disease but are near confident I will have something.