So... today was my first appointment with a GP, focused exclusively on EDS, trying to reach a diagnosis and the right kind of support. And I... don't know what to think. It didn't start with the right foot. I had booked this appointment, a month ago, specifically as a face-to-face (for obvious reasons). Yesterday, my surgery changed it for a phone call because "the doctor was working from home". They also advised me to book a new face to face, if I so desired, directly with the doctor because "they can do it bettter than us"the receptionist said. Anyway, I had my notes prepared. They were not perfect, but I had taken into account what I was advised to do (thank you to all the lovely zebras that responded to my post!). So I had a goal for my appointment; I had compiled a list of the conditions I already have diagnosed and that are linked to EDS; I had a list of symptoms (I wanted to focus in weakness and pain, particularly), notes from previous appointments, treatments I tried and 3 top questions to ask. I also made the GP aware of my ADHD, first thing, and how it may affect the way I communicate. Unfortunately, the GP seemed very unaware of EDS or hypermobility, and that didn't make the appointment very easy. I told him what my goal was. He asked me about for my symtpoms. I got nervous (so many!) and I somehow managed to mention most of them and the conditions I have. I said I had been already done the Beighton test and that these conditions involve much more. I offered the links to both the HMSA and EDS Support UK GP toolkits. The GP asked me if those guided were about the Beighton scale (again). I repeated there is more to it. In the end, the GP accepted for me to send the links and wanted to book a face-to-face appointment for next week. I have mixed feelings, I won't deny it. I hope they at least take the time and interest to read all the info, so we can keep moving forward. But I am a bit worried. We'll see, I guess.
Posted by Geeky Al at 2023-03-14 13:16:39 UTC