Does anyone know the epilepsy foundation's
standards they have set forth for how
often one should have eegs and mris, etc?
I have had this condition for 14-plus
years and have only had two eegs and two
mri's & both eegs showed no abnormal
activity. My husband thinks I need to
find a more proactive doctor and i'm
beginning to think he's right.
Thanks--
dondi
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phil dennison
Experienced User , Rather EHEALTHy
Joined: 14 Nov 2003 Posts: 71 Location: illinois
Posted: 11-14-03 20:55pm
Only you can help your self.So help your
self and find a new doctor. Ask god to
help you.
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dondicee
New User, Becoming EHEALTHy
Joined: 14 Nov 2003 Posts: 4
Posted: 11-15-03 18:41pm
I'm on my third doctor. It's hard to
know when to fish or cut bait.
Dondi
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jamal
Experienced User , Rather EHEALTHy
Joined: 05 Nov 2003 Posts: 60 Location: oroville,Ca
Testing Baby!!!!!!!!!!!! Posted: 11-16-03 00:03am
Hey cee
it will be 6 years this march for me
sweetie. Right away they found scar
tissue on my right frontal lobe. My
firist neou sent me to s.F. Ca. Neouolgy
clinic. I finnaly ended up at u.C. Davis
the last 4 years. The 4 neros all wanted
me to go for b.S.. The doc. At s.F.
Told me most epys go thru 20 to 30 meds to
find the right one that works for them.
Finally after working trying to work and
going through a divorce I lost my job in
2000, could'nt drive anymore, now im on
trial with this man for another year, and
decided to go ahead to have the brain
surgery. 2 years later im back to work
5hrs a day riding the short bus and im
with the love of my life fo 4 years. I
have known him since h.S.
Go to a good place I don't know where you
are at but I have had 12 eeg 7 or 8 m.R.I.
Sllep deprived test. Get a 2nd a opion.
Gotta go take care love jamie
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dondicee
New User, Becoming EHEALTHy
Joined: 14 Nov 2003 Posts: 4
Posted: 11-16-03 08:13am
Thanks so much for the advice and congrats
on finding someone special!
I'll take the advice to heart.
Thanks again, dondi
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sami_1982
Experienced User , Rather EHEALTHy
Joined: 13 Dec 2003 Posts: 200 Location: Australia
Newly Diagnosed (please Help Me) Posted: 12-13-03 21:41pm
Hello everyone am I glad that I
found this site to get some answers. I am
21 yr old female from australia and 2
months a ago I had my very first ever
grand mal seizure. I had 5 in a row
lasting 7-10 minutes each. Lucky my room
mate was home to call the ambulance.
Later that week I went to see a
neurologist and there were no
abnormalities on the eeg. The neurologist
said there is no way that I have epilepsy,
he told me its all in my head but that the
eeg did show up with sever stress.I was
confused then and sad because for about a
month after I still was having these weird
feelings of dejavu and sometimes a sinking
feeling in my stomach and sometimes my
feet would go all tingly like someone was
tickling them with a feather all over them
then if I was standing that was it. I
would fall back and have an episode of
full on jerking. Sometimes I can hear
what ppl are saying around me but not
often and its near the end of the fit. I
cant walk right after I am all wobbly and
I think I am talking normal but the ppl
around me say my speach is slurred I am so
tired for about half an hour after then I
am aware and more with what is going on.
But I never really know what happenes. I
went back to my normal g.P and I told him
everything because I had started getting a
weird feeling in the front of my head and
then I would feel like I was sinking and
then all I could do is stare and then my
eyes would flutter and I would see weird
squiggles and dotts in my eyes. Sometime
I know this is happening and other times I
have no idea it doesnt matter what I am
doing I just freeze and I cant do anything
but wait for it to pass. I try not to
freak out when these things happen now. I
just let it take its course and then I am
so thankful its over. No one in my family
has epilepsy but they say that I always
did a weird starey thing when I was
little. My doctors now are saying I
deffinatly have epilepsy and I am also
photosensitive I cant handle camera flash
or flickering lights or sunlight. I am on
tegretol at the moment but its not
working. So I have to go into hospital
soon because they say what I have is a
rare for of epilepsy. Please if anyone
can help me from feeling alone please help
me understand they say that all the tests
can come back normal but that doesnt mean
that you arenot epileptic because there
has to be a reason right. I think my
problem was the stress.
Thankyou sam
am I glad that I
found this site to get some answers. I am
21 yr old female from australia and 2
months a ago I had my very first ever
grand mal seizure. I had 5 in a row
lasting 7-10 minutes each. Lucky my room
mate was home to call the ambulance.
Later that week I went to see a
neurologist and there were no
abnormalities on the eeg. The neurologist
said there is no way that I have epilepsy,
he told me its all in my head but that the
eeg did show up with sever stress.I was
confused then and sad because for about a
month after I still was having these weird
feelings of dejavu and sometimes a sinking
feeling in my stomach and sometimes my
feet would go all tingly like someone was
tickling them with a feather all over them
then if I was standing that was it. I
would fall back and have an episode of
full on jerking. Sometimes I can hear
what ppl are saying around me but not
often and its near the end of the fit. I
cant walk right after I am all wobbly and
I think I am talking normal but the ppl
around me say my speach is slurred I am so
tired for about half an hour after then I
am aware and more with what is going on.
But I never really know what happenes. I
went back to my normal g.P and I told him
everything because I had started getting a
weird feeling in the front of my head and
then I would feel like I was sinking and
then all I could do is stare and then my
eyes would flutter and I would see weird
squiggles and dotts in my eyes. Sometime
I know this is happening and other times I
have no idea it doesnt matter what I am
doing I just freeze and I cant do anything
but wait for it to pass. I try not to
freak out when these things happen now. I
just let it take its course and then I am
so thankful its over. No one in my family
has epilepsy but they say that I always
did a weird starey thing when I was
little. My doctors now are saying I
deffinatly have epilepsy and I am also
photosensitive I cant handle camera flash
or flickering lights or sunlight. I am on
tegretol at the moment but its not
working. So I have to go into hospital
soon because they say what I have is a
rare for of epilepsy. Please if anyone
can help me from feeling alone please help
me understand they say that all the tests
can come back normal but that doesnt mean
that you arenot epileptic because there
has to be a reason right. I think my
problem was the stress.
