I finally saw Prof. Grahame yesterday and unfortunately was really disappointed. My first thought directly after the appointment was "what a complete waste of time" and that's how it still feels
He confirmed my diagnosis of HMS, which is apparently "effectively" (?) the same as HEDS (I thought it was
the same, but there you go), and that was basically it. I already knew I have HMS, it's pretty obvious, so the ordeal of travelling to London just to be told what I already know is pretty pointless. I have no idea what he will put in my letter and which, if any, recommendations he is going to make. I didn't really get any answers to the questions I asked, nor did Prof. Grahame actually examine any of the joints that are causing me problems. I was hoping that he would at least look at my shoulder, as 6 physios so far haven't been able to figure out what's actually going on with it. The only thing Prof. Grahame seems vaguely interested in were my very arachnodactylous hands, other than that he didn't really seem to care about anything I said. He even interrupted me constantly when I was answering some of his questions, which I thought was incredibly rude. When I asked about how to take pain medication, as I had been given conflicting advice by some GPs, he replied that I shouldn't be taking painkillers at all if I get side effects, because "medication isn't the answer". I know it isn't, but sometimes it's the only way to cope! I don't take them for the fun of it. He also seemed to be constantly worried that I would "get upset" or be "insulted" by him, eg when he said I had a long, very marfanoid face. Oh yes, because I am female and in my 20s, all I care about is my looks and that people think I'm pretty!
Sorry about the rant, it just helps to share my frustration somewhere. I had been really looking forward this appointment as I thought I'd finally get to see someone who understands and who cares, that's what makes it so much worse that Prof. Grahame obviously didn't. I really didn't feel taken seriously at all, I very much got the impression that he decided pretty much from the outset that I was just a "mild" case who didn't need much help or attention. I know there are people who are affected much worse than me, but that doesn't mean that I am fine or don't have the right to be treated with respect and get the help I need. The journey, the night in the hotel and the treatment from the UCHL nurse were a complete nightmare too, so I'll probably spend the next 3 or 4 days in bed recovering from the trip and feeling bad about myself.