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Well, its been a long road, but I feel like I am getting somewhere now. I have just had my second neuro opinion (in Edinburgh), and although I don't have any results from that (he was going to consult with my first neuro to see what to do) I don't hold out many hopes. I was disappointed in the very limited exam he did for a start, and although he was easy enough to talk to and nice enough, his questions really did focus on trying to get me to admit to somatiform problems rather than elucidate the neurological problems. I was too muddly on appointment day to really do justice to the appointment myself as well.

In the meantime I had asked GP for another rheumie appointment, but after Aberdeen having the referral letter for at least two months, they still hadn't decided if I was going to get put on the clinic list when I checked last Monday, and the clinic is next monday! (we only get a visiting rheumie once every six months up here, so its a long wait till the next one). I guess I could still be phoned and told I have an appointment, but I'm not holding my breath. A big part of the problem was the nonsense and useless letter written by GP.

So, the final part of my plan was to just go for a private assessment at the London Bridge Hospital, and my lovely partner has just gone and organised that for me - without having to go through the rigmarole of getting a GP referral. So, I'm off to see Dr Khamashta on 8 October. I'm still not sure if its lupus, or something else, or a combination of more than one thing, but at least I feel that with this appointment I will get assessed appropriately and thoroughly, and if they say its not lupus then I'll be confident that it isn't and stop searching in that direction for answers. And I'll get a few days holiday in London as well, and another week in Yorkshire on the way back to Scotland.
 

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Hi there,

I'm sorry to hear that you still haven't had any joy with your "normal" appointments but it is great that you now have an appointment in October.

Wishing you the very best of luck with that :)

Katharine
 
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