I have finally been seen by doctors at St Vincents for a second opinion about the Vasculitis.
The dermatologist was nice and spent a long time talking with mum and I about everything. The upshot of the appointment is this: They aren’t sure if Vasculitis is the correct diagnosis for me and even if it is we need to work out which type of Vasculitis I have to make sure I’m on the right treatment.
The plan: They did a lot of blood work today to check for many different conditions band I also need to have a chest xray and urine sample tested. They are also beginning to wean me off the Prednisolone starting tomorrow and I will stop taking the Immuran tonight. This of course will cause me to crash and have everything flare really badly. This is what the doctors want/need so they can perform another biopsy to get the correct diagnosis. This biopsy may be able to be done locally or may mean another 7 hour drive which will add to the ton of pain I’ll be in.
So I would expect the next few weeks will be extremely tough for me and I am very scared. I have no idea how I will cope with feeling so yucky and school and exams and everything else I need to do. I am in a ton of pain right now (even with the patch etc) and the thought of it getting worse has me slightly panicked. But it seems like this is the only way to move forward with getting better so I will do what I have to. More on this tomorrow when I am hopefully thinking clearer. I also see Rheumatology next week to get their take on things and maybe some of the results of the tests done.
So I begin the medical merry go round again…