Hope I've put this in the right forum?
As you're probably aware I'm having problems with docs at the moment ( thread in tests and procedures!)
Just need to ask 'what do I do next?' Seen GP today and explained that I don't think the diagnosis by a doctor whom I've never seen that as said I have 'complex regional pain syndrome is correct. Things just don't fit with that. I tried talking to GP but he was very off hand with me? I asked if they think that it's all in my head as that's what he seemed to be implying. I was so shooked when he said YES
As this GP only said a couple of weeks ago that they'd left me long enough without treatment and that I needed something at least for the signs that they can clearly see let alone the symptoms which I now find out that they don't believe. I feel so utterly let down by the medical proffesion. All along I've not wanted to be poorly but for them to say it's in my head is bizarre. I'm 29 years old ( 30 in 2 weeks) not that I'm counting and I feel terrible to say the least. I so hoped that things could have changed and that I could start my 30's off well but now I'm baffled.
GP all along thought it was vasculitis but because no bloods other than high RF and low lymphocytes which apparently doesn't mean anything, show anything else then it's all got to be in my head. I asked that is it possible that there is something going on and at the moment bloods aren't showing but he simply said that I'd have to be one of the unlucky ones of which they don't believe that I am.
From what I've read about vasculitis it is all so familiar other than my blood tests although it does mention a raise in the RF!
I don't want to be ill or labeled with anything but I know my own body. I don't know what to do. I'm afraid I got quite angry with GP as he's truly thrown me for six.
How can I get better and who's going to listen now they all think I'm mad?
Asked GP about vascular clinic appointment and he merely laughed. He said that they wouldn't want to see me as he can feel a pulse and that the problems with my hands are nothing. Nothing that's why I ended up in A & E several months ago with my right hand completely blue and without movement or feeling in it. It was there they said that they wanted me to go to a vascular clinic but as it turned out they forgot to refer me.
Also asked GP about dermatologist appointment that was mentioned to me from locum rheumy on last visit and he said that it's pointless and that I don't need to go as they couldn't do anything? Also having loads of sinus problems again but in his opinion I haven't. The pain in my face, ears and forehead is much worse than 4 years ago when they found I had fluid in my cheek but GP said that I would look different in the face. I explained this is exactly how it was back then and they found fluid in my left cheek so I had to go into hospital for it draining which when I came round from that I felt terrible and it never even worked as I've continued to get the pain. But he was adamant that I don't have sinus problems. I asked about the fluid in my middle ear that he saw last week and he just dismissed it and said that everythings ok.
HELP what do I do next. Do I just try to carry on and see how things pan out.
:sadwalk:
Thanks for letting me get this off my chest.
Mrs M xx