An appointment with Neurology.

I have a little bit more energy today and finally have a bit of mind power to write down how my neurology appointment that took place last Tuesday went. Although I can't remember everything... kind of comes with the territory...

This was the day I FINALLY got to see a neurologist again for the first time since being diagnosed back at the beginning of November.

My new neurologist is really lovely and she spoke with me like the adult that I am stating the facts with medical terminology and taking care that I fully understood everything that was said. Rather than the slightly patronising "you're not a doctor therefore you don't know anything and I'll tell you how your supposed to feel" dribble I've put up with in the past. I have been waiting a very long time for this appointment after being 'lost in the system'.  She was clearly appalled by the wait. After explaining that she hadn't received any referral letters or letters of any sort about my case until the end of February (when my worried mother got in touch with my local health board.. go her!) which was nearly four months after being diagnosed. She was pretty shocked I hadn't had any tests and apologised even though it clearly wasn't her fault.

We discussed everything from the effects of Keppra during pregnancy, to everyday life and the problems I could face with a diagnosis of Epilepsy and of course the seizures themselves. As Keppra is a relatively new anti-epileptic medication there hasn't been a great deal of research done into the drug into things like long term effects. But she explained some of the more scientific sides to the drug for example how they test the suitability for humans on animals when it comes to maximum dosage levels etc. Being a young women she of  course thought it necessary to bring up future prospects of starting a family. Now I'm not planning on having children any time soon but it's very good to know for the future. She told me that to date over 500 babies  have been born healthy to woman taking Keppra. There are issues around contraception and breast feeding etc though but there are ways around that. It's little bits of information like this that make all the difference. Having this condition is something I cannot escape, probably for the rest of my life, which includes taking my medicine for the foreseeable future.

Anywho after a lengthy discussion into all things Epilepsy I was sent there and then for a full blood count including testing for gluten intolerance amongst a million other things. It will be interesting to see if it shows anything up.
I know now that I am soon to have and EEG (link for more info) which is a test that records the electrical activity in your brain via little electrodes that are stuck to your scalp in specific areas. My neuro explained to me that it may be a little uncomfortable as they make you stress your body in certain ways for example breathing really deeply for a few minutes and having lights flashed into your eyes. Basically they are forcing you to experience situations that may bring on a seizure and the results are then recorded in wave form onto paper to be read by a specialist.

I'm also being sent for scans. What scans I'm not really sure I assume CT or MRI? Either way I don't particularly like the sound of this.. I've had MRI's a few years ago when I screwed my wrists up with to much kayaking and martial arts... it wasn't fun. Quite scary actually... very loud banging and being placed in a small tube/ring thing. But like I said I'm not really sure exactly what she meant by "we'll send you for some scans" so I'll have to wait and see on that one. 

My dose of Keppra was also increased there and then from 1500mg per day to 2000mg per day. Which has me pretty damn hard this time... which I briefly wrote about here. Fingers crossed it'll be worth it and will help a little more :)

Plus as a side note... A month or so ago I had a phone call completely out of the blue from my local hospital and it turned out to be a Epilepsy specialist nurse (who had been contacted via my council after they found out I had been "lost in the system" AGAIN!) After our initial phone call we spoke a couple of other times over the phone discussing various things. It was so good to finally have some form of contact with someone who had some answers to the million questions I had building up in my head but with no one to ask. In fact I can't tell you how relieving that was. Anyway I was waiting to go into my appointment in the waiting room when a nurse came over to me and introduced herself as the nurse I had been speaking with on the phone. She was ultra friendly and said she just really wanted to put a face to voice as it were. It was just such a nice thing for her to do especially as I wasn't supposed to have be seeing her at all during the appointment. It's lovely when people make that extra bit of effort and I immediately felt much less nervous. :)

So now is the hopefully much less of a wait for the tests and I am set to see the neurologist again in 3 months time. 

:)