Things to talk to my neurologist about?

[Trinity]

Well, I usually just go into my neurologist appointments without anything written down but this time i've decided to write down a bunch of things. This is what i've got so far. I could use any ideas people may have.

Potential 'symptoms' that i'm concerned about
* tingling and burning sensations in hands and arms
* feeling that when i'm driving that instead of moving past houses, trees etc that they are moving past me and that I am still. I am still aware however, that this is not true.
* tingling sensation and numbness in face/top of head. First time this happened I actually thought 'oh crap' because I thought it felt like the very start of a tonic clonic seizure.
* Continuing to have tremors periodically which is probably due to meds.
* right side of lip tremoring - this has happened twice in the last month.

Ask:

Are these potential 'symptoms' anything to do with heat or my cholesterol levels. Could it be a mini stroke (I will take my CT scan and full blood results), SP seizure (or any other seizure)?

How does my current EEG compare with past ones.

Could there be any benefit to having an ambulatory EEG, MRI or other further testing?

Could light be effecting my Epilepsy (has this shown on the EEG), could specific coloured glasses be used for the treatment of photosensitivity?

 

[Endless]

Great list!

I'd also ask if the symptoms that are concerning you could be a type of seizure, or alternatively, a side effect of your medications.

 

[Trinity]

Great list!

I'd also ask if the symptoms that are concerning you could be a type of seizure, or alternatively, a side effect of your medications.

Are these potential 'symptoms' anything to do with heat or my cholesterol levels. Could it be a mini stroke (I will take my CT scan and full blood results), SP seizure (or any other seizure)?

Yep, i'll add 'or side effect of meds' to that. If he says yes to that my next question would be 'why would I be suffering new side effects from the Epilim i've been on for 21years?'

 

[Endless]

Unlikely, but you can develop new side effects from day 1 to day 10,001. A med can also control your seizures beautifully for 25 years, then stop being very effective. Wish there was a logical way all this happens, but sometimes there isn't.

 

[Blue Cat]

List

I'm new here and it's nice to see a list I recognize (not that I wish this on anyone else, but I'm not alone). Mine is as much an "asleep/heavy" feeling in my arms and hands as a tingling, and similar on the back/lower sides of my head. I don't think it's a stroke since it's on both sides, and am leaning toward side affects. My Lamictal was working well for 7 years, then for a little over one year, now they've added Keppra after a seizure this week. I got a VM from my Neurologist saying he was sorry to hear about the breakthrough, and I left him a message asking if he needs to see me. I don't know what for - he's not going to learn that I haven't e-mailed or left on VM. This is so hard.

 

[Nakamova]

Hi bluecat, welcome!

Sorry to hear about your breakthrough. Why did they decide to add keppra rather than increase the Lamictal dose?

Best,
Nakamova

 

[Blue Cat]

I don't know. In 2009 at the ER they sent me home with Keppra in addition to my 150x2 Lamictal, then my n'st upped my Lamictal to 300x2 and no Keppra. This week the ER sent me home with the Keppra on top of that, no comment from the doc yet. I've heard a fair number of good things on the Keppra expecially for hormone, assuming that's part of it given age, though there doesn't seem to be much on menopause on the forum. After reading some other posts I realize that some leg twitches I was getting before going to sleep recently were probably not just what I thought everyone gets but in my case myoclonic, guess I'll have to bring that to the doc's attention. Taking calcium or iron use to make them go away right away, less so recently. This is certainly frustrating.

 

[Nakamova]

Hi Blue Cat --

There's a thread on menopause here: http://www.coping-with-epilepsy.com/forums/f23/menopause-hormones-9140/

You can search for other met=ntions using the "search" tab at the top rightish part of the page.

 

[Trinity]

Well, my appointment is in 1.5hours and i'm beginning to become a little nervous. Strangely enough I am hoping they find something on the EEG or that something would be diagnosed because i'd at least know what it is. Plus, i'd rather a SP seizure or whatever to a mini stroke. I've only ever been diagnosed with tonic clonic (grandmal) seizures but think perhaps i've had others before and not known enough about them to take too seriously.

 

[Endless]

Trinity,

Good luck. I'll be thinking of you.

I know what you mean about wanting a firm diagnosis, and hoping for a positive eeg. Mine never was positive, which I guess isn't unusual with TLE. So you are in very good company.

Will you let us know how things come out?

 

[Trinity]

Yep no problem. I've been having the numb tingling sensations all morning so hopefully if it's anything to do with my E it will happen during the EEG and it will show up. I know however, that EEGs are not perfect.

 

[Trinity]

Well, he doesn't think the tingling is seizure related and my EEG was fine except for 'general slowing' and he said the flashing lights didn't provoke any abnormal readings as it has in the past. I need to go and get a blood test for my medication levels and also a nerve test and MRI. The blood test i'll probably do this afternoon, MRI on Saturday and Nerve study on Monday at my neuros office followed by a consultation with him.

 

[Zoofemme]

I would be asking why in the world they would increase your lamictal to 300 x 2?? When I began titrating up, I was researching what my doc might max me out at, the one thing that was consistent was that Lamicatal showed no benefit to szr control beyond 400mg. It'll be interesting to see what your levels are at.