Got my referral at last

[Torak]

Say the neuro today, going to stop taking pregabalin and switch to topamax in a few weeks, and he's given me a referral to the specialist unit at Kings College Hospital in London (will take 3-4 months for an appointment).

It's unfortunate that the hospital is in a very crap area of London (Brixton) but... needs must as the devil drives.

So, with that sorted it's time to waste a few brain cells playing World of Warcraft and doing some very bad writing

 

[Bernard]

The UK medical system is a mystery to me. I'm trying to understand it from the bits and pieces I read in the NSE forums, but it sounds like it is really difficult to get any real quality discussion time with a competent doctor.

 

[Torak]

The problem with the NHS is that it is run by bureaucrats and politicians, not medical professionals.

I'm lucky that my GP (who has known me since I was 3 years old) is a really good doctor. He listens, he doesn't have that professional arrogance that many doctors have.

My Neuro was really hostile to the idea of getting a referral to a specialist unit, then I spoke to my GP about this and I suspect he had a word with my Neuro.

I went in today fully read up on NICE guidelines (National Institute for Clinical Excellence) with regards my rights and, much to my surprise, the Neuro agreed to refer me to a specialist unit with no arguements, despite having bulls**tted about me already having been to one (Watford General Hospital was not a specialist unit, it's a district general hospital).

*shrug*

According to my neuro I've tried all but three anti-convulsant meds, topamax being the next one to try.

I'm increasingly of the idea that the anti-convulsants are the only reason that I have seizures.

I spent 7 years on only 200mg/day of carbamazepine and was seizure free for 5 of those years. Long enough for me to pass my driving test first time (I was a very crap driver though, road rage triggered by sensory overloads).

Higher doses caused grand mal seizures and triggered complex partial status epilepticus on one occasion.

So... i'm going to chill and try to forget about everything for a while. I feel like I'm banging my head against a brick wall sometimes with the epilepsy so I'm just gonna try to relax. Read some m ore books, write some more junk etc.

I did decide to do something positive by taking an Open University course, an Honours Degree in computing. It'll take six years, but being disabled means I can get state funding for it.