Private neurology consultation.

First and foremost... the hospital was like a 5 star hotel!! It was so clean and inviting and the staff where happy and smiling, when we were in the waiting area it felt more like we were waiting to have our room keys handed to us than waiting to see a consultant. 

We (my mum and I) went in as if I were a fresh new patient and went over everything we could think of at the time. The neurologist seemed very nice and I felt very at ease talking to him and discussing everything. A lot of the time I tend to feel somewhat intimidated when it comes to medical appointments mostly through faults of my own though. However I feel like I could handle an appointment with him by myself and not feel stressed that I'm taking to much time to explain everything or having to repeat information that I'm being told just to make sure I understand. Most importantly, I feel, is that he seemed interested, he listened carefully and asked plenty of questions. When I showed him photographs and videos he looked at them time and time again replaying and pointing at certain things asking me about them as I went along. Obviously I'm clueless while seizures are happening but he wanted to know what people had said and if they had mentioned I do the things he was watching in the videos at different times and things. 

When I explained that I've lost some vision in my left eye which had been picked up by the hospital and opticians on separate occasions since August yet nothing had been done he seemed quite shocked. He asked if my doctor knew to which I told him I'd taken the opticians results there myself and handed them in and seen him in an appointment after that and asked about it, but still nothing further has been said about it. My neuro then declared he would send me for an ophthalmology appointment at the hospital (NHS thankfully money wise) then discuss the results and further tests/treatment if any with me at a later date. This then lead onto my constant headache that is getting me further and further down at the moment. He couldn't really say all that much about it though apart from he wants to review all of my past scans and see where to go from there when I speak to him next. 

The immediate plan is to increase my medication Lacosamide (Vimpat) from 300 mgs per day up to the maximum dose of 400 mgs per day. To go alongside my Keppra which will remain at 2500 mgs per day. If this increase doesn't work then I will come off Lacosamide altogether and try another medicine. He did mention one but I can't quite remember which one... Lamotragine rings a bell though. I am to keep taking Clobazam as a rescue medicine as it well and truly does the trick when I need it. 

My Video Telemetry results still haven't come through so he said that as soon as he has them he will examine them then write to me with the (if any) findings. These cannot come soon enough for me, they could tell a crucial story and not knowing is driving me crazy. 

I have now been placed on the waiting list to see him on the NHS he warned me that this may take some time (believe me I'm used to it) in the meanwhile he is not taking me off my current neurologists list as I am well overdue a review with her I should go and see her if an appointment becomes available in the meantime. It just so happens that they are both in regular contact with one another as colleagues and he will be discussing my case with her so that she is in the know that I have been seen by him. Long term wise though I am know on his list which means I will be transferring my care over to him here in the hospital close to where I live (literally 2 minutes down the road) so it will be much easier to get to an appointment. 

I didn't realise just how much I was longing to know that someone is looking over my case and trying to help me. The relief is immense knowing that a fresh pair of eyes scanning over my notes coming up with viewpoints and knowing that my file isn't just sat waiting on a shelf gathering dust. I'm still going over everything in my head at night, there was a lot to take in and it's taking me some time to think through all the information.

Everything seems to be on the move again now thankfully. Back to the NHS now though so we'll just see how long it takes further tests, results and appointments come through. I'm not holding my breath in the meantime... I'd be rather blue!