Just got my copy of the neurologist letter

[Cherriuz]

Diagnosis: Probably epilepsy
blah blah blah other stuff/past history etc. The last bit is a load of mumbo jumbo to me to be honest.

Impression: (Which im guessing is basically what she thinks)
Blackouts are descriptive of generalized seizures though I think the frequency is a little atypical (which I googled coz I had no idea what it meant) therefore at present I have classed this as probable epilepsy. I have requested an MRI and an EEG (is there any point on 200mg of lamortigine a day? even if something was there would it still show up? the seizures have calmed down since i started going up in dose). I have instructed her to titrate (i have no idea what that means) up lamotrigine to 100mg twice a day. Follow up in 4 months after tests to diagnose.


So, what i Gather from this, is neurologists speak in a different language to us lesser human beings. And she thinks its Epilepsy (should have seen my face drop when i read it in black and white)
ps, the bits in ( ) are basically my input to the letter, and are not written by her

 

[Loopy Lou]

Titration is the process of increasing/decreasing meds slowly.

She basically says the frequency of your seizures are not usual although in her opinion it does sound like epilepsy, it's standard to run an MRI and an EEG and states the instructions she's given you for your meds

 

[Cherriuz]

Why couldnt she just put that in the letter? rather than turning it into mumbo jumbo that a simple minded person like me cant make sense of? hahaha
Thank you very much for translating it for me!

Will the eeg show anything up on 200mg per day of lamotrigine going through me? It have been seizure free for a whole 2 weeks now, which is the longest I have gone since this all started /cheer

 

[Loopy Lou]

I'm sure i was on Lamictal when i had my EEG. The machine still caught some complex partial seizures though, enough to know where they originated from, where they spread to. That gave the neurologist enough information to confirm the diagnosis.

 

[Nakamova]

Will the eeg show anything up on 200mg per day of lamotrigine going through me?

Hard to say. In my case, the meds seem to suppress the abnormal brainwaves, so an EEG right now probably wouldn't show anything of interest. I know this because in the past, when I've tried tapering off meds, my neuro had me do EEGs along the way, and it wasn't until the med levels went down that the abnormal brainwaves started showing up.

 

[qtowngirl]

Hi cherriuz, and welcome to the world of E. The actual diagnosis is a real SOB, but just know you're not alone. Here you have good friends, and it sounds like you have a decent neuro, which is a lot more than some sufferers can say. There are actually quite a few a-hole docs out there and some people have to go through many to find the right one (myself am on my third neuro but this time is an epileptologist so I'm fairly confident).

And yep there is a point to the tests; the medication plays no part in something showing up on an mri, reason being if there is an existing lesion or some sort of damage it is indicated through an image, and regardless of being on meds or what kind won't affect that. To titrate means to have you work up to a set dose (being the 100mg 2x) to see if that is the best dosage for your current seizure frequency. I know they use big words, that's their job, and it's frustrating, but silver lining is we learn a lot too.
Someone mentioned on here not too long ago how much more educated those with epilepsy are compared to the average person, mainly b/c we are so much more responsible for our own health and what's happening to us. Couldn't agree more!! When I think back to what I knew about E at diagnosis in '03 compared to now... it's like night and day. You'll get there sweetie, and lean on us all you want!!
(((BIG HUGS)))

 

[Cherriuz]

Thanks everyone. You guys are so great, I kinda feel bad for asking so much when i cant really help anyone else because right now I know so little about it. Some of the stuff I read on here thinking I might be able to give some input on looks like its written in some kinda secret language.
My neurologist is fab, although it would be great if i could pronounce her name (dr L Vaithinanathar) I've looked at it and sort of broke it down to how i think it looks, but when she said her name it sounded totally different, so from now on, she will be know as Dr. V.
It's weird. I kinda think I'm in limbo for the next 4 months, she's pointing that way, but it's not confirmed. So i don't know where to put my head. She wants to rule out anything sinister, brain growths and things like that, so it's kinda weird because when I think about it, E is the best of a bad bunch of things right now. Although at the same time, it also scares the heck out of me.

 

[CQ:)]

HI Cherriuz,

Don't worry about asking questions, that is why we are all here to help each other.
Sharing our stories & asking questions does make it easier to understand epilepsy.

I know what you mean by not understanding the letter from your neurologist but drs & specialists usually use medical terms in letters to each other which sometimes is hard to understand.

I had to go to my GP recently to get an updated referral to keep going to the epilepsy clinic at the hospital where I had my surgery. I kept a copy of the referral of the letter & when I read what the dr put I couldn't understand half the stuff he wrote because it was in medical jargon lol. I wasn't to worried though because I knew the neurologist at the epilepsy clinic would understand it & if there was a problem they'd tell me.

 

[Cherriuz]

Well there should be a copy sent to my GP but ill take mine friday just incase its not made it yet. I'm sure it will make sense to her. I get the gist of it now its been translated by Loopy Lou, I'm just nosey really and trying to learn what I can, understanding the letter is a good start, i think. Learning some of the jargon. Seems like a lot to learn about, feels like standing at the bottom of a mountain looking up

 

[epileric]

Do feel free to ask but if it's medical terms you're not sure about then check out this medical dictionary.

 

[Cherriuz]

Ooooooo - thank you for that link, i have bookmarked it. I'm just trying to soak up as much info as I can right now.

 

[thornton8000]

I hear ya Cherriuz,
I've had a few docs actually tell me to please leave and not come back because I knew more about my problems before they had a chance to look me over and my epi doc after she she start talking I tried talking to her and I was telling her things I read on her and things I read on epilepsy foundation.com and she was pretty much sat there with her mouth open and then made a quick dianosis of PNES on me but thanks to NAKAMOVA and others on here I've gotten a much better grasp that yes I have a seizure issue now that my neuro has put me on a 2nd med and it stopped my seizures. Just read everything you can if you dont understand look it up! google the words and never stop trying to figure out what they are saying to you and never stop learning about whats going on with you, keep a daily journal it helps I started one 2 months ago and am still going! used to hate it and honestly as a guy (not my cup of tea!) I still hate it! but I do it for me and my wife and doctor so she can add to it and for all my doctors to see what is going on, and everyday I read something new and I bookmark it and print something out to show my doctor or read it to him when I call him so we can talk about it, always asks questions Cherriuz or you'll never get the answers you need!
Good luck
and blessings!
Mike

 

[Cherriuz]

Thanks so much mike. Ive been asked to keep a diary of what happens. Not my cup of tea either, and I'm female!
I'm with my GP again on Friday and we get on really really well (she helped get me adopted) so we go back 23 years now, so she will help me work things out I'm sure. Going to have a chat with her friday about it all at my appointment with her