On Monday I had an appointment with the rheumatologist. My GP had referred me back to him to query ehlers danlos syndrome after he had given me a diagnosis of fibromyalgia. A complaint often running alongside EDS.
I went fully expecting the consultant to do the examination and give me a diagnosis, or not, depending on his medical opinion. I was really pleased I might finally get some answers, though anxious about what it would mean to my life.
Imagine my emotional drop when he told me he couldn't do the diagnosis and had to refer me to the genetics team to assess me for EDS. He did tell me that I scored a 5 on the beighton scale (which puts me in the bendy enough for EDS category). I felt even more gutted. I genuinely feel that EDS is the problem as there are relevant issues with my son and my sister as well as my own.
Why on earth did he make me wait two months for an appointment when he knew he couldn't do a diagnosis? I'm so frustrated with it all. I'm struggling with pain and exhaustion and just want answers so I can deal with it and adjust my life and potentially my sons life and get on with it.
I have no faith in our local genetics team as they weren't very helpful last year. I'm now considering calling the consultants secretary and asking for the referral to go to a London consultant I've been recommended. It's a long trek but it could prove more helpful. I have to ask myself if I do this or be more vocal when seeing the local team.
Yet again there is more waiting.