alltests done - no appointment till August - What happens now ???

[angie2312]

Hi all

I apologise for my absentness lately been busy getting shoved in scanners and having wires attached to my head - I have now had the tests done - and am not seeing the consultant until August - What happens now ??? I cant help wondering what all those tests revealed about my weird and wonderful brain . Everyone who knows me thinks I will be the first person ever to be found not to have a brain (charming) - does anyone know if I will hear anything ?? Or do I really have to spend the next two months wondering and waiting ??? ANy answers gratefully recieved

[skillefer]

hi angie! Actually, I'm in the US and don't know exactly how the british health system works....hopefully, one of the other brits here can help. But don't be surpirsed if your EEG comes back normal. That tends to confuse people, but believe it or not, many of us here have perfectly normal EEG's. In fact, in the over 30 yrs. that I've been diagnosed with epilepsy, I've only had 1 odd EEG, and that was because I actually had a seizure during the test.

While you're waiting to talk with the consultant, just follow their instructions. If you've been prescribed meds, take them. If not, just wait. In the meantime, it might help to take a proactive approach and keep a journal. Jot down the following:

1. food and drink (what, when, and how much)
2. sleep (how much each night)
3. stress (emotional as well as physical like colds or flu and how you deal with them)
4. odd feelings (odd feelings/tastes/smells/sounds/sights, migraines, etc...as well as what you were doing just prior)
5. seizures (when and how long they lasted)

This will give your doc/consultant excellent info on your average day, and they might be able to see a pattern or figure out what triggers your seizures.

[RobinN]

Sometimes what is going on in your brain, actually begins in your "gut".

[angie2312]

Thank you for the advice - i will be sure to start writing everything down from now on - I am just the worlds worst impatient person - I wish they would just let me know - hey ho - will have to be patient for once in my life

[Loopy Lou]

I know how you're feeling. I have to wait til September to see my neurologist too. Still trying to get my test results after a couple of months, also.

I asked the person doing the MRI if i could see a picture of my brain She just sort of looked and me and said "uhhh.... no."

I would have thought they'd get asked that often!

Skillefer's advice is good. If you had a nurse come up to see you, they probably gave you a blue folder (Epilepsy record). I haven't filled mine in whatsoever, as i was trying to stick my head in the sand before i found this messageboard, but it seems like a pretty good idea

[angie2312]

Yes you would think you could see the MRI picture -- after all it is your brain !! I think these doctors are brilliant BUT they just dont rush themselves to let you know anything - which isnt very fair !!!!
I saw my Neurologist a month ago and have had all these tests done but dont get to see him agian till August -He sent me a copy of the letter from our appointment of what he found - and he said that my symptoms are " Too Textbook" so doesnt want to say either way whats going on - how can something be too textbook - I can understand it all takes time but its very friustrating thats for sure *finished rant now*

[Loopy Lou]

He said it was "Too Textbook"? I didn't think there would be anything about epilepsy that is textbook, as it's so varied and probably different in most cases.

And trust me, i know about them not rushing :P Maybe i'm a pretty odd person, but i really wanted to see what my brain looked like. I'm a curious sort

[angie2312]

I know what you mean , your not odd because I would really like to see mine too - although it is under debate whether I have one hehe !!! I found the " Too Textbook" remark very strange - I would have thought too textbook would make it easier for him - Grr - Its all soooo frustrating
Well I wish you good luck with your results and hope they let you know something soon - And hopefully your neurologist will let you see your brain xxx

[skillefer]

This is why I actually like the US health care system. It's great if you have insurance. I had an MRI done last..May. The results were sent to both my ENT and neurologist, and the films were sent to me. So I got to see a pic of my brain. I gave my neurologist the pics to keep in my record for me. And that took me...oh, about 2 weeks. The neurologist and ENT had the results within 5 business days. For people with insurance, the US healthcare system can work great. That, and heck...I have some great docs.