Welcome, I am also in UK and relate to what you have experienced. I have been off work continuously now since March and am currently on rest, walking (with my dog to pull me home), sertraline 300 mg daily, gabapentin 400 mg daily, naproxine 500 mg daily and omeprazole as a stomach lining protector.

My gp has worked with the neurologist to get my meds right to alleviate some of the pain but it is all just management rather than active treatment. Good luck with your neuro-psych appt, I am still pushing for a referral myself.

This forum is a godsend and mine of information and support for all of us x

Wow, thanks guys, I really appreciate all those responses. I'm still really angry that the only place people understand what I am going through is here though!

I was aware when I wrote it all down that it was far too long and rambling but I found it therapeutic and think I might use it to give to people in the future when I find it hard to explain or forget things about my symptoms.

I got my Neuropsychology appointment through today, for the beginning of November, at John Radcliffe Hospital in Oxford, UK. It is a useless letter, it doesn't tell me what the appointment will involve, only that it is 2-3 hours long and can I take someone with me that knew me before. It is with Dr Ian Baker.

Has anyone been there for such an appointment or can anyone tell me what they are going to do?

Should I make myself as ill as possible beforehand to get maximum effect/so they believe me?

I really can't decide who to take as genuinely don't think anyone I know understands, but have plenty of offers of a lift as would be incapable of getting myself there and back alone anyway - but someone who is willing to give me a lift is not necessarily the right person for the appointment - I presume I need someone to back up my symptoms and how I've changed? I find some many of my friends are so supportive but really they just think I'm milking it and don't understand my real issues and I don't want that to affect anything that could come out of this appointment.

If anyone has any advice on this I would be grateful.

I have also read some posts where people keep saying cognitive therapy helps - how does it help exactly? I do have anxiety issues but can hanlde them and don't like people focussing in on them as really I just want the PCS fixed then the anxiety will go!

I have a lot of anxiety today as I am meant to be going away this weekend and am not sure if I should. Decision making has become incredibly hard and I hate letting people down and fear them thinking I am depressed becuase they don't understand PCS.

And one last question I've been trying not to ask but really need to - is the fact that I have continued doing things for 8 months meant that I won't fully recover? Does now resting actually cause the damage to be permanent or should I be just doing as much as I can now and resting later? Really need to know whether to be tough on myself here - no docs have said not to be at work still but I don't want to be like this forever - but also I don't want to affect my career or professional reputation.