Hi all, well I'm so angry
After many months of waiting to see the rheumy consultant instead of one of his nurses or his registrar I had an appointment with him yesterday, the consultation lasted all of 5 minutes during which time he laughed when I mentioned that the local physios they had sent me to see had said they had never heard of HMS and he said that was rubbish!! When I mentioned that I am struggling with the futura wrist splint as it doesn't help me at all with cooking (which is what I was given it for) as I still can't managed lifting pans or removing something out of the oven, his response was sarcastic to say the least, suggesting that the only way to give total support to the wrist would be a cast!!! I also mentioned that I do find the splint useful for when I am driving but that it has caused me to have a really nasty flare up of eczema on the back of my hand and the underside of my forearm he just said well don't wear it then!!!
He then said well it seems that you can manage to do everything for yourself, when I replied that I often struggle to get out of the bath and can't do proper cooking by myself or that on bad days I really struggle with the stairs he just ignored me.
I asked if he could exclude that the HMS I had did not have any heart problem involvement and he just laughed and said 'well you really don't look like you have Marfans or EDS'. Well I know I don't have Marfans but I wasn't aware that there was any specific 'look' for EDS. He has conceded to send me for an echo to rule out any heart involement.
I also asked if I should be more concerned about osteoporosis and he said not at all there is no evidence that you would be more likely to get that because of HMS. He quickly did the beighton and said well you only score a 7, the gp letter said you were a 9......... so what that doesn't make the pain I have any less!!!
He ended the appointment by telling me that this is just something that you have got you just need to get on with it exercise and take painkillers.
Sorry for the long post, this man just made me feel like the doctors I saw as a child did, that I was wasting their time and that there wasn't anything really wrong with me.