Doctor doesnt think i have epilepsy! FRUSTRATED!!!!!!

[Janellie8]

Hello everyone!
I haven't been on for a while, I feel bad because you are going to hear me vent for a little...
Sooooo, I went to the doctors the other day to review my EEG and my doctor said it was borderline- not abnormal but not normal either. And guess what... my doctor said that I needed to go back to Seattle to talk with a neurologist to make sure that I have epilepsy. I AM SO ANGRY!!!!!!!!!! So angry I could cry. I have epilepsy lady. My old neurologist from like 3 years ago said that I might not have epilepsy... my doctor read this and now she wants me to go and check to make sure. Like, what the heck?!??? I am having seizures every night and a few during the day and she wont bump my medication up because she doesn't want me to take meds if I don't have to- BUT I HAVE TO. I am taking 50mg of Lamictal in the morning and the night, and 400mg of tegretol. I just feel really frustrated. Today I have had 2 seizures, the first one was okay but the second one was rough on me- I fell to the floor I just.... KAJDFKADKFAKLDFALKDSHKLADSJGKLADJSFKLAHDFJKBDGJKFHGH..... And she wants me to go to Seattle in the summer.. I cant wait that long! ughh. I wish I didn't have epilepsy I'm feeling really down right now. Sorry for complaining/virtually whining.

Janellie

 

[epileric]

Is there any way you can find a local neurologist? That might make things easier. Finding a new doctor probably wouldn't be a bad idea either.

I once had a neurologist give me pep talks for 3 years about he was going to cure my seizures (that there should have made me suspicious) but finally after doing nothing but re-doing my prescription every 6 months he sent me for an EEG & then told me that I don't have epilepsy and wouldn't re-do my prescription so I can honestly say I have an idea as to the frustration you feel.

 

[CQ:)]

Hi Janellie,
Sorry to hear your Dr is being a pain.
I have no idea how far away Washington is from Seattle but I assume it's not that close.

I agree with Eric about seeing if you can get into a local neurologist & also thinking about getting a new GP.

I recently changed GPs, not because I had any issues with my old GP but I started working full time in August & where I work is in the next town to where I am living. My old GP was walking distance to wear I live but he only sees patients during working hours & isn't opened on weekends which makes it hard.
The new GP I see is only 5 minute walk from where I work so I can easily see him during my lunch break or before I start work.


I hope things get better & sending you some Aussie hugs :hugs:

 

[rich956]

How far away are you from Seattle ?
Sometimes finding another doctor is a better choice indeed.
Only going by what tests say is not an evaluation.
Some say that if you have had more than two seizures you pretty much have epilepsy.
And venting is ok...:hugs:

 

[marika853]

I agree with everyone else. Get yourself another dr. ASAP!
In Dec. my neuro told me I could go off Keppra totally, cold turkey! That was not right, to me. So he said, "If it makes YOU feel better you can go off it gradually." Needless to say, I do need meds and I am changing drs. next month. Luckily, he wrote me a script for 3 mts supply so I have enough to last me.
You have to advocate for yourself. NO ONE knows your body better than YOU!
Good Luck!
M

 

[kaelieh]

Geez, my neuro said it doesn't matter if my EEG is normal, if I'm having seizures, I'm having seizures. She's always said the EEG can only confirm epilepsy not rule it out. When I started having seizures again she almost didn't even order a new EEG but I asked for one because I wanted a new one before I age out of my dad's health coverage this summer since I knew it be pretty much fully covered under his policy.

 

[kaelieh]

I would try to go see another doctor if you can.. Shoot, I know some people have their general practitioners treat their epilepsy and if you could find one that would you would be better off than with the neuro you have now.

 

[arnie]

Hi Janellie! What Kaelieh says about the EEG is right. Having a normal EEG only means that at that moment you are not having any seizures activity. Epilepsy often does have to be diagnosed more by symptoms than by EEGs or other tests. I have never had an abnormal EEG, and the various CT scans and MRIs I have had don't show anything definite either. There are slight abnormalities here and there, but not too much outside the realm of normal.
I like analogies, so I guess it would be like hearing quiet little rustlings in your basement then going down there and seeing little teeny turds and tiny bits of chewed up stuff, You would say "Ah-ha! I have mice!" So you call the pest control people, they come over and see the turds and whatnot, but look around and don't see any mice so they tell you you don't have mice!
Anyhow, carry on! Vent as much as you need to!

 

[Ruth]

Hi Janellie8, glad to have you back.

Ask for a Video EEG. That might work.

I have had neurologists like that. They know that I have epilepsy, though.

 

[Janellie8]

Is there any way you can find a local neurologist? That might make things easier. Finding a new doctor probably wouldn't be a bad idea either.

I once had a neurologist give me pep talks for 3 years about he was going to cure my seizures (that there should have made me suspicious) but finally after doing nothing but re-doing my prescription every 6 months he sent me for an EEG & then told me that I don't have epilepsy and wouldn't re-do my prescription so I can honestly say I have an idea as to the frustration you feel.

Thanks for understanding I actually like my doctor, I just think that this one opinion from a neurologist a ling time ago doesn't matter now- what matters now is that I am having seizures and I need medication adjustments, but she just wants to be sure I guess.

Janellie

 

[Janellie8]

Hi Janellie,
Sorry to hear your Dr is being a pain.
I have no idea how far away Washington is from Seattle but I assume it's not that close.

I agree with Eric about seeing if you can get into a local neurologist & also thinking about getting a new GP.

I recently changed GPs, not because I had any issues with my old GP but I started working full time in August & where I work is in the next town to where I am living. My old GP was walking distance to wear I live but he only sees patients during working hours & isn't opened on weekends which makes it hard.
The new GP I see is only 5 minute walk from where I work so I can easily see him during my lunch break or before I start work.


I hope things get better & sending you some Aussie hugs :hugs:

Hello Thank you so much for the Aussie Hugs
Yeahh Seattle is 3 hours away when I live at home in the summer, and during the school year when I am in college its 5 hours away. That's awesome that you are only walking distance from your GP? GP is a.....?

Janellie

 

[Janellie8]

How far away are you from Seattle ?
Sometimes finding another doctor is a better choice indeed.
Only going by what tests say is not an evaluation.
Some say that if you have had more than two seizures you pretty much have epilepsy.
And venting is ok...:hugs:

Hi In the summer I am 3 hours away form Seattle and during the school year I am 5 hours away. I like my local doctor, she's just being ugh right now. Yesssss I have had more than 2 seizures.. I am glad I have wonderful people that will listen to me here!

Hugs,
Janellie

 

[Janellie8]

I agree with everyone else. Get yourself another dr. ASAP!
In Dec. my neuro told me I could go off Keppra totally, cold turkey! That was not right, to me. So he said, "If it makes YOU feel better you can go off it gradually." Needless to say, I do need meds and I am changing drs. next month. Luckily, he wrote me a script for 3 mts supply so I have enough to last me.
You have to advocate for yourself. NO ONE knows your body better than YOU!
Good Luck!
M

Thank you so much It is true, I do know my body more than she does! I don't mean to bash on her, but I think she is wasting time on helping me get better And I am glad you were able to keep a 3 month supply to last ya

Hugs,
Janellie

 

[Janellie8]

Geez, my neuro said it doesn't matter if my EEG is normal, if I'm having seizures, I'm having seizures. She's always said the EEG can only confirm epilepsy not rule it out. When I started having seizures again she almost didn't even order a new EEG but I asked for one because I wanted a new one before I age out of my dad's health coverage this summer since I knew it be pretty much fully covered under his policy.

I am glad your doctor takes action like that! I would like that for a change. Yeah it was good to get one when you have a chance like that! EEG's suck sometimes, but it has to be done just to see what is going on in there- and I understand what you mean when you say that the EGG can be normal even if we are having seizures. Hope all is well!

Hugs,
Janellie

 

[Janellie8]

Hi Janellie! What Kaelieh says about the EEG is right. Having a normal EEG only means that at that moment you are not having any seizures activity. Epilepsy often does have to be diagnosed more by symptoms than by EEGs or other tests. I have never had an abnormal EEG, and the various CT scans and MRIs I have had don't show anything definite either. There are slight abnormalities here and there, but not too much outside the realm of normal.
I like analogies, so I guess it would be like hearing quiet little rustlings in your basement then going down there and seeing little teeny turds and tiny bits of chewed up stuff, You would say "Ah-ha! I have mice!" So you call the pest control people, they come over and see the turds and whatnot, but look around and don't see any mice so they tell you you don't have mice!
Anyhow, carry on! Vent as much as you need to!

Thanks so much arnie I loved the analogy! Makes PERFECT sense. Your analogy is funny because today I went to the pet store and saw some white mice I wanted! I didn't get them today, but I am begging my mom to let me

Hugs,
Janellie

 

[CQ:)]

Hello Thank you so much for the Aussie Hugs
Yeahh Seattle is 3 hours away when I live at home in the summer, and during the school year when I am in college its 5 hours away. That's awesome that you are only walking distance from your GP? GP is a.....?

Janellie

Rich explained to me where Seattle was but me being Aussie I had no idea lol.
A GP is General Practioner so regular Dr.

I live in a country town where there are only 2 neurologists who both treat all neurological conditions. I saw one of the neurologists in my home town from 2002 - 2010, as in 2009 he suggested I have surgery & was referred to a epiologist in the city who works at the hospital where I had my surgery.
I still go to the epilepsy clinic at the hospital here I had my surgery for yearly checkups but it is approx 3 hour drive each way.

It is a long way to go to see a neurologist but I don't mind because the epilepsy clinic I go to has a great team of specialists, the neuro I see is really nice & he keeps my local neurologist up to date with how I'm going.

 

[Janellie8]

Rich explained to me where Seattle was but me being Aussie I had no idea lol.
A GP is General Practioner so regular Dr.

I live in a country town where there are only 2 neurologists who both treat all neurological conditions. I saw one of the neurologists in my home town from 2002 - 2010, as in 2009 he suggested I have surgery & was referred to a epiologist in the city who works at the hospital where I had my surgery.
I still go to the epilepsy clinic at the hospital here I had my surgery for yearly checkups but it is approx 3 hour drive each way.

It is a long way to go to see a neurologist but I don't mind because the epilepsy clinic I go to has a great team of specialists, the neuro I see is really nice & he keeps my local neurologist up to date with how I'm going.

Looks like you are being taken care of real good Hmmm, I wish my doctor and my neurologist had that kind of relationship. I am in search of a new neurologist... so its like starting all over again. Best of luck to you darling

Hugs,
Janellie

 

[CQ:)]

Looks like you are being taken care of real good Hmmm, I wish my doctor and my neurologist had that kind of relationship. I am in search of a new neurologist... so its like starting all over again.

The specialists at the epilepsy clinic I go to always keep your regular drs up to date on your progress.

So when I go to the epilepsy clinic the neurologist will send a report to both my local neurologist (I don't see him anymore as I go through the clinic but if I ever had a problem I could call him) & my GP.

I am due to go back to the epilepsy clinic in 2 weeks to see see my neurologist, I'll be glad when that date comes because I have a few things I want to speak to him about.

Good luck with finding a new neurologist.

 

[Zolt]

Hey Janellie,

If the doc doesn't believe you have seizures, i suggest video taping it or video taping someone that has seen you have one as proof to your doc that you indeed have them. If you are having them with the meds you are now taking and it's not controlling them, the first step a neuro would do is to increase dosage.

How is life up there in WT? I use to live in Paulsbo, a little Viking type village across the bay from Seattle. But that was a long time ago, back in the late 70s.

Cheers


iano: op:

 

[Janellie8]

Hey Janellie,

If the doc doesn't believe you have seizures, i suggest video taping it or video taping someone that has seen you have one as proof to your doc that you indeed have them. If you are having them with the meds you are now taking and it's not controlling them, the first step a neuro would do is to increase dosage.

How is life up there in WT? I use to live in Paulsbo, a little Viking type village across the bay from Seattle. But that was a long time ago, back in the late 70s.

Cheers


iano: op:

Yeah I was a little angry at that. And that's a great idea! I should look into that. My doctor is going to change my dosage until I go to see a neurologist in the summer

Its great over here! Weather is PERFECT. I live on the wayyyy east side by Moscow, Idaho.

Janellie