Thank you all for the replies, I really appreciate them !

Sandy - My Doctor suggested the intractable Baclofen pump to help with the Dystonia but unfortunately in the UK, they wont implant it until you are over 16 years of age so i'd have to wait at least another 8 months. He's wanting to inject into my spinal cord with Baclofen to see if that would work in the short term but unfortunately because I have been fainting, we have been told that we'd need to wait for this to subside before he'd be willing to do it.

MsL - Good Luck with your move, I hope everything goes well and wish you the best of luck! Thank you SO much for your input on the Sativex - I really appreciate getting input off someone who has already been on it! My mum and I have read a lot of good and bad stories about it (like everything I suppose) but it seems to work mostly in people with MS from what we have been told so not sure if it would help me. It's currently not used to license in children under 16 in the UK but we were told if we got strong evidence that it might work, my Dr may be able to license it for me so we will do more research into it!

Hope4thebest - Thanks for the well wishes! Unfortunately because I have been having a lot of pain and not sleeping / collapsing, I have not been able to attend school and am therefore having to go back down the home tuition route - something which I really don't want to do as it means I am not able to complete my college course in Health and Social Care but I have tried going to school full time on many occasions now and each time end up in a major flare. My mum asked if I could just have home tuition and go to college but unfortunately, that wasn't possible so I will have to pack it in. It's a shame as its something we fought soo hard for and I have many great friends on it but we have to put my health first. Hopefully i'll be able to continue it when i'm older if things settle down a bit healthwise.

I was wondering if the medications could be causing the collapsing also but I only take oral Ketamine and it isn't daily (only been told to use it when I really have to due to my age)! I collapse around 20 times on average a day so its getting really scary for my mum, boyfriend and I. Hopefully my Doctor will be able to help Wednesday.

Thanks again everyone and I shall keep you all posted as to how my appt goes. I hope you are all doing well !

Alison