finally got my neurology appointment ..... advice please ?!?!?!

[angie2312]

Hello all .... again

First of all I just wanted to say thanks to everyone for the lovely welcome and messages

I would really like some advice ... I finally have my appointment to see the Neurologist ... and its next week ... Its my first one as I have been hiding my funny turns for years thanks to my GP being most unhelpful years ago ... But after deciding to brave talking to him again recently he decided he probably should have listened too me the first time .... and now I have the appointment I feel a lil apprehensive and if I am honest scared !! The reason for feeling this way is because .... I have no idea what to expect of this appointment or any others to follow ... what sort of tests do they do to find out if it is epilepsy ??

Anyone out there able to help me on this ..... ??? I have started to keep a diary of my funny turns so I can tell him how many I have been having and when ... but is there anything else I should be doing in preperation for this ???

Would appreciate any advice anyone can give ?!?!?
xxxxxxxxxxxxxx

 

[skillefer]

Hi angie! He'll want to know some basic information like:

1. do you have headaches often
2. Does your family have a history of migraines or seizures

He'll prolly order some bloodwork and an EEG.
Definitely share your journal with him. In fact, make a photocopy for him. The more detail the better. If you notice more of your funny turns around your period, make sure that you tell him that too.

 

[RobinN]

Make sure you have family history with you.
A full discription of you "funny turns"
Any tests that have been taken over the years.

Be prepared for more paperwork, more questions, appointments for more tests.
Know what you want. Know what kind of treatment you expect. If you are fine with medication let him know. If you believe you might be able to treat yourself with alternative therapies then let him know that too.

Read up on http://www.coping-with-epilepsy.com/forums/f23/epilepsy-101-part-faq-part-tips-advice-1255/

I think you will be starting from square one, and there is nothing to be nervous about.
Take someone with you if you can, because it is hard to remember everything, and you don't want to take precious time writing it all down.

Good luck

 

[Kansas Educator]

The others gave you good advice. It won't be as bad as you are thinking and will be a relief for you to finally know! Please keep us updated. When is your appointment?

 

[angie2312]

Hi Skillfer , Kansas and Robyn

Thanks for your advice , I am very much looking forward to getting things started but its the fear of not knowing what they will do that scares me a little - your advice is great - and I'm sure I can go a little more prepared now - I am also taking my mother with me for two reasons , firstly because she has witnessed my funny turns and secondly because everytime the big E word is mentioned she goes into a state of denial so am hoping the appointment will be good for both of us onder:

My appointment is next Thursday and I will certainly keep you all updated and will probably be back for more advice .... if your not all bored of giving it by then

Thank you so much for your help

 

[vapour]

The Neuro will take down a history and details of what is happening to you during these "funny turns"

he will then probably order EEG's and an MRI.

Just so you know, a clear EEG does not mean you dont have epilepsy, and a abnormal EEG doesnt mean you have epilepsy either... kind stupid huh ?

During the EEG you probably would have been sleep deprived the night before and they will try to induce a seizure....an EEG will only usually show abnormal if you have one at the time of the EEG.

If it comes back clear they may want to do more EEG's.

I had 2, both abnormal... in my left temporal lobe.

The MRI will be a good thing to rule out anything else that could be causing your episodes, and if it is epilepsy may also show perhaps a leison.

Most people are scared of the MRI, but i found the EEG to be much worse.

I hope they get to the bottom of it, sometimes it can take a while. Just be patient and try not to get frustrated.

take care.

 

[angie2312]

Thanks for taking the time to reply to me - really appreciate it

I have read about the EEG tests they do ... and I know a little about the MRI ... but my funny turns are very sporadic and I have not been able to see a pattern to when they happen . But for example the weekend before last on Friday I had one really bad one ... Saturday , I had 6 really horrid horrid ones and then Sunday I had 2 which were mild but made me feel worse than all the others put together ..... But since then I havent even had one .... So is this going to make it harder to diagnose ??? WIll the doctor think I am just a little mad ... or is this quite normal for seizures to come and go like that ... It all confuses me

Sorry I am sooo full of questions and desperate to sort myself out ... Srry for ranting on :roflmao:

 

[Bens mom]

Hello Angie,

everything will be fine, keep your diary as simple as possible and to one sheet of A4 paper, I have been asked to keep diaries in the past and then told they don't have time to read them.
You will be asked lots of questions but take your time you don't have to rush. They will want to know any family history, bumps or bangs to your head, when you first noticed your FT and loads of other stuff answer as best you can it is not a test and there are no trick questions.
They may only do some blood test on the day and you will have to go back for EEG's, MRI ect.
Ask your consultant what he plans to do and what he thinks is wrong with you and how he plans to treat you, also ask why he is doing these things the why's are very important incase you don't feel happy with anything.
Don't be afraid to ask if you don't understand that's what they are there for.

EEG.s are were they attach wires to your scalp [ pick yourself of the floor] it doesn't hurt you won't feel anything trust me.

MRI's are were you lie flat and you go into the machine this doesn't hurt either.

Your consultant is there to help you not scare you. It is still your illness and you make the decisions about how you want to treat it. If you are at all unsure say so don't be afraid to say you want to think about things for a short while.

Wishing you and your mom all the best for Thursday.

Keep Happy

 

[angie2312]

Hi Bens Mom

Hope you are well . Thank you so much for the reply

I am , as you may have noticed , getting myself in a bit of a panic .... just the fear of the unknown I suppose ... I am also a little excited at the thought of possibly getting sorted at long last.

You sound like a bit of a professional at these things , and its nice to hear your side of things ... Thanks for the explanation of everything , I am trying to read up on things but its all a little daunting at times .

Thanks for the best wishes .... I shall return on Thursday with many more questions and probably more daunted than I am now

Thanks for everyones advice - your all superstars

 

[RobinN]

Just remember that Epilepsy is not a disease. It only means that you have had two or more seizures.
There is a cause for your "funny turns". It might be something as simple as a food sensitivity, or a mineral deficiency. Treat the cause, not the label of E.

 

[flinnigan]

Hi Angie and welcome, It's not all scary and yes sometimes there is no pattern. Just when I think I've figured it out I have one out of the blue. Denial is a big issue for families. Hopefully she can get a grip and be supportive, but if not don't worry there's lots of help here. Good luck and God Bless.

 

[Meetz1064]

Hi Angie

It's not as bad as it all sounds, I promise. I can remember the EEGs when I was a kid. They were MUCH worse than what they are now.

Back then, it was bare wires put UNDER the SKIN of your scalp. NOW, electrodes are pasted on TOP of your scalp. SOOOOOOOO much better. OK, so the glue is a pain in the arse to get out. But I'd rather that than the other......