Does that mean I have to keep my fingers and toes crossed untill then. It is
trickey to type with crossed fingers.

Hope all goes well. It sounds like you are in good hands.

Lynne

"mighty mouse" <mousie9947NOS...@hotmail.com> wrote in message

news:1335ihjf9ssd2f3@corp.supernews.com...

smudgedr...@gmail.com wrote:

On Apr 27, 5:43 am, mighty mouse <mousie9947NOS...@hotmail.com> wrote:

I haven't long got back. My neuro visits a hospital near my parents
house, so I dropped in for dinner with them after my appointment.

Well....not exactly bad news, but no news at all.

My latest EEG showed more bursts of abnormal activity, which are
suggestive of Generalised Epilepsy (which is what I was misdiagnosed
with and what my current neurologist believes I DONT have). So he took
my results and history to a review meeting last week, and he and a group
of 16 other neurologists discussed my case. The verdict is that the
test is inconclusive. There isn't enough evidence to totally disprove
the epilepsy diagnosis, but not enough to be sure it's not epilepsy
(although the doc believes it's not) or to figure out what it could be.

He said once you have a diagnosis of epilepsy, it can be almost
impossible to reverse it, because you have to be absolutely certain.
Most doctors give up because they can never get enough evidence.

So, in order to get some conclusive evidence he's sending me for an
overnight EEG. This will most likely take place on a weekend in the
next few weeks, and will involve going into hospital for a minimum of 12
hours, but more likely Friday night to Sunday morning. I will be able
to move around a bit, but have to stay hooked up the entire time so I
can't go home during the day or leave the hospital. (Second thing I
asked after "can I leave during the day" is "can I take my laptop" lol,
I'm such an addict!)

I'm happy to do this, because I think I might finally get some answers.
The neuro believes it's still likely that once he can prove that it's
not epilepsy, the result will be that no treatment is required and I can
just go about my life. But he wants to be sure of what this is, and I
want him to be sure, because otherwise I'll just keep worrying about
this.

Interestingly, the type of brainwaves in these abnormal bursts are theta
waves. I googled theta waves because I couldn't remember their function
from my studies, and got some interesting results. They're associated
with a state of drowsiness, daydreaming and accessing the subconscious,
memories and emotions (not a direct quote from any one site. I need to
find a good source of info). It's only a theory, and I have nothing to
back it up, but this could provide some of an explanation regarding why
I've been having intrusive daydreams and volatile emotions for a long
time, but worse lately. It's something I'll ask my pdoc and neuro about
in future appointments.

Anyway, I'm trying not to worry too much about all this, and hoping that
the overnight EEG will be a positive experience and will finally stop
this anxiety about my neurological health.

Gotta love how precise medical testing can be sometimes...NOT! I hate
waiting for answers and then getting answers that just leave more
questions. I've had an EEG like that and it wasn't so bad but it was
a long time ago...mine was in 7th grade. I also have had a sleep
study like that, and I was supposed to go to sleep while being hooked
up to all this stuff, and that was hard....I layed there for so long.
Are you able to sleep, I hope? Are you allowed to watch tv, and can
you use your laptop? ;-) I'm assuming you don't have to stay awake
for so long like you did before this last one, at least I hope not for
your sake. How soon are they going to schedule it? Hopefully not too
long from now, as I know you don't want to wait too long for a more
definitive answer. Glad you could meet up with your parents as well,
assuming that was comforting for you. Take sweet care Kylie, you're
in my thoughts...I've been keeping up on all your posts but am at a
loss for what to say concerning your therapy and issues you're dealing
with, as I don't think I've overcome those demons myself (even though
I've spent years of therapy and other forms of help to overcome it
all). I'll be looking for your updates.

((((Kylie))))

Rose

Hopefully it should be scheduled for sometime in the next couple of weeks.
Most likely it will be on a weekend, which is good for me since it avoids
having to take time off work, and the neurology lab is quieter on weekends
so it's easier to get in.

And no I don't have to stay awake again, thank goodness. I have to stay
on the ward, but I can watch TV, read, use my laptop (hopefully they have
internet access, otherwise I'll play games) and sleep my normal cycles.
They want to study if I'm having these bursts of brain waves while I
sleep, or if the bursts change to look more like an actual seizure.

I had a sleep study done a few years ago, but since it only has a partial
EEG (not all the electrodes) it's not accurate enough. Plus having it
done at this particular hospital, in the neurology department rather than
a sleep disorder lab, they'll be looking for different things. He said it
would be less uncomfortable this time, because the electrodes will only be
attached to my head, not my arms, legs and chest too.

Thanks for your comments about my other posts....I understand that it's
not something that a lot of people can relate to, and it may be difficult
for others to read. I appreciate you taking the time.- Hide quoted text -

- Show quoted text -

Does that mean I have to keep my fingers and toes crossed untill then. It is
trickey to type with crossed fingers.

Hope all goes well. It sounds like you are in good hands.

Lynne

"mighty mouse" <mousie9947NOSPAM@hotmail.com> wrote in message
news:1335ihjf9ssd2f3@corp.supernews.com...

smudgedrose@gmail.com wrote:

On Apr 27, 5:43 am, mighty mouse <mousie9947NOS...@hotmail.com> wrote:

I haven't long got back. My neuro visits a hospital near my parents
house, so I dropped in for dinner with them after my appointment.

Well....not exactly bad news, but no news at all.

My latest EEG showed more bursts of abnormal activity, which are
suggestive of Generalised Epilepsy (which is what I was misdiagnosed
with and what my current neurologist believes I DONT have). So he took
my results and history to a review meeting last week, and he and a group
of 16 other neurologists discussed my case. The verdict is that the
test is inconclusive. There isn't enough evidence to totally disprove
the epilepsy diagnosis, but not enough to be sure it's not epilepsy
(although the doc believes it's not) or to figure out what it could be.

He said once you have a diagnosis of epilepsy, it can be almost
impossible to reverse it, because you have to be absolutely certain.
Most doctors give up because they can never get enough evidence.

So, in order to get some conclusive evidence he's sending me for an
overnight EEG. This will most likely take place on a weekend in the
next few weeks, and will involve going into hospital for a minimum of 12
hours, but more likely Friday night to Sunday morning. I will be able
to move around a bit, but have to stay hooked up the entire time so I
can't go home during the day or leave the hospital. (Second thing I
asked after "can I leave during the day" is "can I take my laptop" lol,
I'm such an addict!)

I'm happy to do this, because I think I might finally get some answers.
The neuro believes it's still likely that once he can prove that it's
not epilepsy, the result will be that no treatment is required and I can
just go about my life. But he wants to be sure of what this is, and I
want him to be sure, because otherwise I'll just keep worrying about
this.

Interestingly, the type of brainwaves in these abnormal bursts are theta
waves. I googled theta waves because I couldn't remember their function
from my studies, and got some interesting results. They're associated
with a state of drowsiness, daydreaming and accessing the subconscious,
memories and emotions (not a direct quote from any one site. I need to
find a good source of info). It's only a theory, and I have nothing to
back it up, but this could provide some of an explanation regarding why
I've been having intrusive daydreams and volatile emotions for a long
time, but worse lately. It's something I'll ask my pdoc and neuro about
in future appointments.

Anyway, I'm trying not to worry too much about all this, and hoping that
the overnight EEG will be a positive experience and will finally stop
this anxiety about my neurological health.

Gotta love how precise medical testing can be sometimes...NOT! I hate
waiting for answers and then getting answers that just leave more
questions. I've had an EEG like that and it wasn't so bad but it was
a long time ago...mine was in 7th grade. I also have had a sleep
study like that, and I was supposed to go to sleep while being hooked
up to all this stuff, and that was hard....I layed there for so long.
Are you able to sleep, I hope? Are you allowed to watch tv, and can
you use your laptop? ;-) I'm assuming you don't have to stay awake
for so long like you did before this last one, at least I hope not for
your sake. How soon are they going to schedule it? Hopefully not too
long from now, as I know you don't want to wait too long for a more
definitive answer. Glad you could meet up with your parents as well,
assuming that was comforting for you. Take sweet care Kylie, you're
in my thoughts...I've been keeping up on all your posts but am at a
loss for what to say concerning your therapy and issues you're dealing
with, as I don't think I've overcome those demons myself (even though
I've spent years of therapy and other forms of help to overcome it
all). I'll be looking for your updates.

((((Kylie))))

Rose

Hopefully it should be scheduled for sometime in the next couple of weeks.
Most likely it will be on a weekend, which is good for me since it avoids
having to take time off work, and the neurology lab is quieter on weekends
so it's easier to get in.

And no I don't have to stay awake again, thank goodness. I have to stay
on the ward, but I can watch TV, read, use my laptop (hopefully they have
internet access, otherwise I'll play games) and sleep my normal cycles.
They want to study if I'm having these bursts of brain waves while I
sleep, or if the bursts change to look more like an actual seizure.

I had a sleep study done a few years ago, but since it only has a partial
EEG (not all the electrodes) it's not accurate enough. Plus having it
done at this particular hospital, in the neurology department rather than
a sleep disorder lab, they'll be looking for different things. He said it
would be less uncomfortable this time, because the electrodes will only be
attached to my head, not my arms, legs and chest too.

Thanks for your comments about my other posts....I understand that it's
not something that a lot of people can relate to, and it may be difficult
for others to read. I appreciate you taking the time.

On Apr 27, 9:14 pm, mighty mouse <mousie9947NOS...@hotmail.com> wrote:

smudgedr...@gmail.com wrote:

On Apr 27, 5:43 am, mighty mouse <mousie9947NOS...@hotmail.com> wrote:

I haven't long got back. My neuro visits a hospital near my parents
house, so I dropped in for dinner with them after my appointment.
Well....not exactly bad news, but no news at all.
My latest EEG showed more bursts of abnormal activity, which are
suggestive of Generalised Epilepsy (which is what I was misdiagnosed
with and what my current neurologist believes I DONT have). So he took
my results and history to a review meeting last week, and he and a group
of 16 other neurologists discussed my case. The verdict is that the
test is inconclusive. There isn't enough evidence to totally disprove
the epilepsy diagnosis, but not enough to be sure it's not epilepsy
(although the doc believes it's not) or to figure out what it could be.
He said once you have a diagnosis of epilepsy, it can be almost
impossible to reverse it, because you have to be absolutely certain.
Most doctors give up because they can never get enough evidence.
So, in order to get some conclusive evidence he's sending me for an
overnight EEG. This will most likely take place on a weekend in the
next few weeks, and will involve going into hospital for a minimum of 12
hours, but more likely Friday night to Sunday morning. I will be able
to move around a bit, but have to stay hooked up the entire time so I
can't go home during the day or leave the hospital. (Second thing I
asked after "can I leave during the day" is "can I take my laptop" lol,
I'm such an addict!)
I'm happy to do this, because I think I might finally get some answers.
The neuro believes it's still likely that once he can prove that it's
not epilepsy, the result will be that no treatment is required and I can
just go about my life. But he wants to be sure of what this is, and I
want him to be sure, because otherwise I'll just keep worrying about this.
Interestingly, the type of brainwaves in these abnormal bursts are theta
waves. I googled theta waves because I couldn't remember their function
from my studies, and got some interesting results. They're associated
with a state of drowsiness, daydreaming and accessing the subconscious,
memories and emotions (not a direct quote from any one site. I need to
find a good source of info). It's only a theory, and I have nothing to
back it up, but this could provide some of an explanation regarding why
I've been having intrusive daydreams and volatile emotions for a long
time, but worse lately. It's something I'll ask my pdoc and neuro about
in future appointments.
Anyway, I'm trying not to worry too much about all this, and hoping that
the overnight EEG will be a positive experience and will finally stop
this anxiety about my neurological health.

Gotta love how precise medical testing can be sometimes...NOT! I hate
waiting for answers and then getting answers that just leave more
questions. I've had an EEG like that and it wasn't so bad but it was
a long time ago...mine was in 7th grade. I also have had a sleep
study like that, and I was supposed to go to sleep while being hooked
up to all this stuff, and that was hard....I layed there for so long.
Are you able to sleep, I hope? Are you allowed to watch tv, and can
you use your laptop? ;-) I'm assuming you don't have to stay awake
for so long like you did before this last one, at least I hope not for
your sake. How soon are they going to schedule it? Hopefully not too
long from now, as I know you don't want to wait too long for a more
definitive answer. Glad you could meet up with your parents as well,
assuming that was comforting for you. Take sweet care Kylie, you're
in my thoughts...I've been keeping up on all your posts but am at a
loss for what to say concerning your therapy and issues you're dealing
with, as I don't think I've overcome those demons myself (even though
I've spent years of therapy and other forms of help to overcome it
all). I'll be looking for your updates.
((((Kylie))))
Rose

Hopefully it should be scheduled for sometime in the next couple of
weeks. Most likely it will be on a weekend, which is good for me since
it avoids having to take time off work, and the neurology lab is quieter
on weekends so it's easier to get in.

And no I don't have to stay awake again, thank goodness. I have to stay
on the ward, but I can watch TV, read, use my laptop (hopefully they
have internet access, otherwise I'll play games) and sleep my normal
cycles. They want to study if I'm having these bursts of brain waves
while I sleep, or if the bursts change to look more like an actual seizure.

I had a sleep study done a few years ago, but since it only has a
partial EEG (not all the electrodes) it's not accurate enough. Plus
having it done at this particular hospital, in the neurology department
rather than a sleep disorder lab, they'll be looking for different
things. He said it would be less uncomfortable this time, because the
electrodes will only be attached to my head, not my arms, legs and chest
too.

Thanks for your comments about my other posts....I understand that it's
not something that a lot of people can relate to, and it may be
difficult for others to read. I appreciate you taking the time.- Hide quoted text -

- Show quoted text -

It's not that it's difficult or uncomfortable whatsoever, at least for
me, to read your other posts....my heart goes out to you more than you
know. I can relate to the pent up anger as well. What I was saying
is that I just don't know what to say in reply because I am feel like
all the time and energy I put into therapy trying to deal with all of
my issues really wasn't all that helpful, because I wouldn't be
feeling how I am now if it was. Of course you have my very best
wishes and and I hope so much for you that you will find some of the
answers and resolution you need through your therapy. I definitely
still feel that therapy is an important part of treatment. I'm just
at a point personally where I'm almost angry at therapy per se...I
don't believe in it's effectiveness for me personally any more. I
can't keep throwing every fiber of my being into something and hope to
God it helps me in some way, only to pan out that I wasted all that
time, money, energy, tears, and on and on. I just can't do it right
now. So that's what I was saying without explaining all this....I
hope this isn't TMI. I truly truly hope you will benefit from it and
will be looking for your posts anytime I am here for your updates and
progress. You're a neat lady, I'm so glad I'm getting to know you.

Rose