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what's wrong with me and why can't I find a good doctor???

Mon, 08/23/2010 - 20:21

I have deleted this post because I am tierd of people telling me to just accept the fact that I have epilepy! My problem is not acceptance. My problem is that I can't find a competant dr. After doing my own research I feel that I very well may have E. HOWEVER. My previous drs all said so based on NOTHING!!!! Which as a medical professional is completely irresponsible. They NEVER looked at test results... or even looked into my history. My first three drs didn't know anything about my family. ALL of them made their choice based on me having ONE seizure. ONE SEIZURE does not mean epilepsy! I have found a few friends on here... and some support... so thank you to those people. In the future... if you answer my posts... I would greatly appreciate you reading the entire post, as all of the above was stated previously.

Comments

Re: what's wrong with me and why can't I find a good doctor???

Submitted by cwmabrey on Sat, 2010-09-18 - 06:16

Hi Ashleigh,  my name is Channon.  I've had seizures for the past 15 years.  I've been asking the same question about who/where is a good neurologist that has the knowledge, as well as a heart.  Let me tell you my story...I had my first episode when I was 15 years old, so I was still in pediatrics.  I went to my appointments faithfully.  She was so nice, asked me questions, listened, and did EVERYTHING she could do for me, including writing a letter for a scholarship.  Then..., I was transferred over to adult medicine at 18.  I met with a neurologist, and it I just got a negative vibe.  It started getting to the point I felt like I was wasting my time...this is with all doctors!  I went through a stage when I rebelled against my parents, moved out, and lived the "I'm grown" life.  Meanwhile, I was still making the appointments, but to keep my meds filled.  I got married at 21...pregnant at 22...I had a seizure, which prompted my husband to call 911.  An appointment was set due to the seizure.  I was told that the DMV had to notified, and my license would be suspended for at least 6 months.  I asked for resources, but instead he said to get family and friends to drive me around...I was pissed!  I'm already going through hard times, and now this!?  I don't know anyone that has free time to be my chauffeur.  Anyway, from that point on, I hadn't reported any attacks.  Reason being, I'd know the cause of the attack-didn't take meds, not enough sleep, stess, etc.   Recently, that all changed...I jumped up out of my sleep late at night.  I tried to find the pediatrics neurologist, and found she had transferred to another location.  I didn't get a chance to wake my husband, so I had the seizure on my own.  I ended up on my back, and I thought I was gonna die!  If it wasn't for my positioning close to my husband and my jerking waking him...that would've been it for me.  When I came to,  my husband crying, (something I've never seen him do), I was gasping for air,  was speech was impaired, head was pounding, and my motor skills were way off.  I made the decision that I didn't care what the consequences would be...I need to go in.   I'm not too happy with the neurologist I'm seeing.  I've had an MRI and EEG, in which didn't show anything alarming.  My license has now been withdrawn due to "unfavorable paperwork".  He has made the same suggestion about family and friends...I just wish doctors were more sympathetic, and showed they cared by perhaps taking an extra step.  It seems like medication is the answer to it all, and when you try to talk to them about a problem in which you know is severe...they can't find anything, so it must be okay.  I need a doctor that treats me as they'd want to be treated

Hi Ashleigh,  my name is Channon.  I've had seizures for the past 15 years.  I've been asking the same question about who/where is a good neurologist that has the knowledge, as well as a heart.  Let me tell you my story...I had my first episode when I was 15 years old, so I was still in pediatrics.  I went to my appointments faithfully.  She was so nice, asked me questions, listened, and did EVERYTHING she could do for me, including writing a letter for a scholarship.  Then..., I was transferred over to adult medicine at 18.  I met with a neurologist, and it I just got a negative vibe.  It started getting to the point I felt like I was wasting my time...this is with all doctors!  I went through a stage when I rebelled against my parents, moved out, and lived the "I'm grown" life.  Meanwhile, I was still making the appointments, but to keep my meds filled.  I got married at 21...pregnant at 22...I had a seizure, which prompted my husband to call 911.  An appointment was set due to the seizure.  I was told that the DMV had to notified, and my license would be suspended for at least 6 months.  I asked for resources, but instead he said to get family and friends to drive me around...I was pissed!  I'm already going through hard times, and now this!?  I don't know anyone that has free time to be my chauffeur.  Anyway, from that point on, I hadn't reported any attacks.  Reason being, I'd know the cause of the attack-didn't take meds, not enough sleep, stess, etc.   Recently, that all changed...I jumped up out of my sleep late at night.  I tried to find the pediatrics neurologist, and found she had transferred to another location.  I didn't get a chance to wake my husband, so I had the seizure on my own.  I ended up on my back, and I thought I was gonna die!  If it wasn't for my positioning close to my husband and my jerking waking him...that would've been it for me.  When I came to,  my husband crying, (something I've never seen him do), I was gasping for air,  was speech was impaired, head was pounding, and my motor skills were way off.  I made the decision that I didn't care what the consequences would be...I need to go in.   I'm not too happy with the neurologist I'm seeing.  I've had an MRI and EEG, in which didn't show anything alarming.  My license has now been withdrawn due to "unfavorable paperwork".  He has made the same suggestion about family and friends...I just wish doctors were more sympathetic, and showed they cared by perhaps taking an extra step.  It seems like medication is the answer to it all, and when you try to talk to them about a problem in which you know is severe...they can't find anything, so it must be okay.  I need a doctor that treats me as they'd want to be treated

Re: what's wrong with me and why can't I find a good doctor???

Submitted by AshMac128 on Sun, 2010-09-19 - 02:46

hey:) im sorry this is all happening to you, i know how confusing this is. i remember when i first was diagnosed with epilepsy. i was 13 and we still, to this day, have no idea how i got it. it was weird because i started missing my doses and skipping them which led me to have a seizure and that was my snap into reality. if i didn't take my meds then i would have a seizure. to this day it's still hard to accept that i have epilepsy and i'll be 22 in 2months. it's not easy to accept and it sure as s*** isn't easy to live with. i go to Dr. John Wooten in Raleigh. i'm not sure if you're close to there but he's an amazing dr. the first dr i went to was a COMPLETE quack. i had a seizure one time and my dad said, "why did she have the seizure" and the guy's response was, "because she has epilepsy" my dad wanted to hit him. what kind of answer is that? so we went to another dr. who was good i'll admit and he got it tolerable but this dr., i started going to him when i was 16 and i'm cleared to drive now:) that's the hardest thing about epilepsy is the driving part but as long as you're taking your meds and (you can even control seizures with diet) not stressing out toooo bad (stress brings on seizures) then you should be fine. although some cases are worse than others. i'm blessed because i know beforehand and i haven't had ANYTHING happen in over a year. the only time something happens is if i'm sick and that's because it messes with my medication levels just like in everybody else. i've been freaking out about school and how im so sick of going to a Community College how i want to go to a University or an actual college like everybody else does because it does make you feel different as if nobody understands, which to an extent, is true. i just found a scholarship for epileptics though. nobody explained to me the longer you fight it the worse off you'll be. nobody wants to accept it but if you, on any level think you might, take the meds and accept the diagnosis.the worse that could happen is itll help with the seizures.what if youre in the car driving and you have a seizure?it happens a lot. i dont mean to sound like i'm lecturing i'm just saying, i learned the hardway because i didn't want to accept the diagnosis either...it's hard but if you work with it, it gets easier. it doesnt get easy but it definitely gets easier...like a deployment. (been there too) that time away from him isnt easy but after awhile it gets easier;)

Ashley

hey:) im sorry this is all happening to you, i know how confusing this is. i remember when i first was diagnosed with epilepsy. i was 13 and we still, to this day, have no idea how i got it. it was weird because i started missing my doses and skipping them which led me to have a seizure and that was my snap into reality. if i didn't take my meds then i would have a seizure. to this day it's still hard to accept that i have epilepsy and i'll be 22 in 2months. it's not easy to accept and it sure as s*** isn't easy to live with. i go to Dr. John Wooten in Raleigh. i'm not sure if you're close to there but he's an amazing dr. the first dr i went to was a COMPLETE quack. i had a seizure one time and my dad said, "why did she have the seizure" and the guy's response was, "because she has epilepsy" my dad wanted to hit him. what kind of answer is that? so we went to another dr. who was good i'll admit and he got it tolerable but this dr., i started going to him when i was 16 and i'm cleared to drive now:) that's the hardest thing about epilepsy is the driving part but as long as you're taking your meds and (you can even control seizures with diet) not stressing out toooo bad (stress brings on seizures) then you should be fine. although some cases are worse than others. i'm blessed because i know beforehand and i haven't had ANYTHING happen in over a year. the only time something happens is if i'm sick and that's because it messes with my medication levels just like in everybody else. i've been freaking out about school and how im so sick of going to a Community College how i want to go to a University or an actual college like everybody else does because it does make you feel different as if nobody understands, which to an extent, is true. i just found a scholarship for epileptics though. nobody explained to me the longer you fight it the worse off you'll be. nobody wants to accept it but if you, on any level think you might, take the meds and accept the diagnosis.the worse that could happen is itll help with the seizures.what if youre in the car driving and you have a seizure?it happens a lot. i dont mean to sound like i'm lecturing i'm just saying, i learned the hardway because i didn't want to accept the diagnosis either...it's hard but if you work with it, it gets easier. it doesnt get easy but it definitely gets easier...like a deployment. (been there too) that time away from him isnt easy but after awhile it gets easier;)

Ashley

Re: what's wrong with me and why can't I find a good doctor???

Submitted by lonefather on Mon, 2010-09-20 - 14:55

I hope you are able to find the answers you are looking for.

I hope you are able to find the answers you are looking for.

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