I had my first appointment at Aintree earlier this week. This was a big thing for me as I’ve been waiting months to start the process of finding out what is wrong with me. It took me an hour to drive there and 45 minutes of going around in circles in the Multi-storey car park to find a space.
The appointment itself left me feeling deflated and unsatisfied. I feel as though I was totally unheard by the doctor.
She asked me questions but moved through them so fast I was unable to explain exactly what I’ve been experiencing. As I was explaining my symptoms, she moved to the next question as though she was trying to get through her list as fast as possible.
I’m currently going through a good patch with my symptoms after having a massive spiral downwards a few weeks ago. So there aren’t many physical symptoms to see. In particular, my skin rash on my arms and legs has really gone down so it just looks like small red follicular bumps.
The doctor glanced at it and didn’t acknowledge me when I tried to explain how it looks when it gets bad and that it can be so inflamed and painful. She just dismissed me and told me that it was nothing and even she has a rash like that.
She didn’t ask about my fatigue, headaches or my eye aching problem. She asked about previous issues/diagnosed problems with my eyes and migraines but again I didn’t get a chance to explain new issues.
She had a quick feel of my joints and I confirmed they weren’t painful at that moment in time.
She basically told me I didn’t have Behcets but she supposed they could do a pathergy test and take some blood tests.
She showed me to the blood room for my test and then told me she would call me in 3 months.
I have to email some pictures of the arm after the pathergy test and I feel as though I want to mention all this in the email. But I don’t want to rock the boat and make the situation worse. But after basically being told that I don’t have Behcets and not being told where else I can seek alternative help. 3 month is a long time.