Today’s hospital appointment is the last one for the time being. Still awaiting the Lung Specialist, but apparently the waiting list is very long indeed.
Anyway today it was the EEG. Interestingly (to me anyway) the myoclonus has calmed down a bit over the last few days and so I wondered if the fact I’ve been back on Prednisolone might have anything to do with that, or whether it was just coincidence. The eeg-man (who probably has a proper title, sorry) said he wasn’t sure, but it was possible that if the twitching, jerking, absences and general weirdness is to do with some sort of inflammation, then steroids could possibly calm that down. Interesting.
I was duly wired up. The way it works is I parked up the wheelchair with a little box on a stand behind me. From the box came all the lovely coloured wires. These were attached to my head with stickers and gel which included a wire stuck to each collar-bone area. Not sure what they were for. Nothing too uncomfortable.
There was a camara pointed at me.
Once I was wired and properly facing the camera the test began. I had to just sit there, eyes open, then shut, then open and so on. That was ok, although keeping my eyes shut was weird as my body started twitching – not something I had expected. Don’t know what that’s supposed to mean.
The next bit involved looking into a bright flashing light, eyes open and shut. It was pretty unpleasant. He did say I could stop him but I decided to keep going. At the point where I thought the nausea was more than I could politely manage the thing finished! Thank heavens for that!
That was it. No idea how long before I get to hear of results but the next epilepsy clinic appt isn’t until October so I am guessing I have to wait 6 months (Ah the NHS).
I’ve had a look at a couple of epilepsy sites to see what I can hope for especially if (as always seems to happen) they can’t see anything on it or as happens even more often they simply lose the thing. Unfortunately it seems that EEGs are not as useful as I’d hoped. So many people have clear ones even at the point of grand mall seizures. This is not what I wanted to read.
For ten years I have handled all the “there’s nothing in the results” from doctors and I’ve coped with FM and all it’s extras reasonably well. During the major flare two years ago I realised that even in a serious state of illness like then, there is no medical support for this disease. I started to read the research myself and find my own way through, learning to accept that I am getting worse and that I wont ever get better (unless God offers me a miracle). I have managed that. I have been extraordinarily blessed that I have never had to deal with depression or anxiety about any of this. I have been frustrated and angry at times and I have lost what little faith I ever had in the medical profession as a whole – with one or two exceptions, but I think a bit of anger and frustration helps the fight, whereas I think depression must make it so much harder to deal with.
But this business is proving a real challenge to my keep-b%$%^ing-on (as Churchill signed all his letters) approach to life and this disease. I just can’t stand the idea that I will be having these weird jerks and twitches in public. The idea that I will be left with them, and that they will have to get a lot worse until I’m having full fits before there’s a hope of treatment is terrifying frankly. Seeing the number of people left to suffer just because the machine hasn’t spotted the problem is deeply disturbing. So many good doctors and researchers have spoken out against a machine based approach to medicine. Patients are human beings not mere machines, and we know our own bodies.
I am not saying I wont carry this cross if God sends it. Obviouly I will. But I can’t help a little hope that the doc will say, “The results show you have this…” and then “And we have a great treatment for that…” or better yet, “And we can stop it happening.”