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fed up waiting....
Thu, 01/27/2005 - 15:53hey,ive been a member on this site now for a few months as i have been experiencing what i call seizures since the beginning of last summer.At the begining they were few and far between, one a week, but since last august they have gradually been building up to around 15/20 a day and i consistently have them throughout the night.I have always contemplated posting a message on this site but i always refused to do so until i was properly diagnosed with epilepsy by my neurologist. However, today i reached the final straw. The whole process of gettin diagnosed with epilepsy in order to get treatment is pushing me to the limit.I am an 18 year old girl, currently studying for my a levels. My life has chaged so much this past 5 months, i havent been able to do many of the things i was able to in the past, and i feel quite alone due to the fact that the doctors don't really seem to care about getting my illness sorted. My neurologist cancelled my first appointment becoz he was sick or something or other, then i had to wait another 2 months to be seen. Then the hospital lost my medical file and forgot to put me on their record, causing a further month delay. And today i am upset because the hospital said that they would phone no later than today to schedule me with an appointment.I'm so sorry if i have rambled on a little too much here, because i know that there are many more people alot worse off than i am. I just feel helpless and the minute and would appreciate any advice from anyone.thanks x
Comments
RE: fed up waiting....
Submitted by lemond on Wed, 2005-01-26 - 16:21
princessmaid,Have you tried making an appointment with a different neurologist? Maybe your primary doc can reccommend someone and get you on their calendar earlier that you normally could get seen. When I moved to a diffent state and ended up in the ER, the emergency room neuro got me in with a neuro within a week. Maybe you can get in sooner if you have another doc call to make the apt. I hope you can get things straightened out. Getting in to see a neurologist has always taken forever for me.Good luck,Lemond
RE: fed up waiting....
Submitted by Belinda on Thu, 2005-01-27 - 06:33
princessmaid,20 seizures a day and more more use to be the norm for me wo where I had hundred or more in a month.I had made an appointment 6 months in advance once and was called 2 days before my appointment be told the doc wouldn't be there.I'm had epilepsy for 41 years never been controlled by meds.Not everyone is though.waiting can be hard but that's one thing you have to do.You can always change to a different neurologist.I have a big choice to big from because I'm near teaching hospital/university.Are you near hospital were you can choose different doc to go to?My neuro he's great been going to him be 15 years in Septmber. Belinda
RE: fed up waiting....
Submitted by batman on Wed, 2005-01-26 - 16:10
princessmaid,
Having epilepsy isn't easy, but it definitely isn't hard either. I was 18 years old myself when my seizures started, but I didn't know that what I was feeling were seizures. That was 18 years ago. Over the past 11 years, I've gone through alot. Have taken several EEG's & MRI's, a CT, WADA test, and just one year ago this month, I went through the pre-surgical testing with the overall result of it, was that it was too risky to do further surgery because I may loose my speaking abilities completely.
But over the past 4 years, I've learned many things about seizures and epilepsy, by sharing my story with other people with epilepsy, parents with children who have epilepsy, and by reading alot of information in books, websites, at a program and by attending a local support group.
DO NOT make yourself feel helpless. There are well over 2.5 million people with epilepsy, just in the United States alone. Think of this... You see alot of people everywhere, right? See if you can tell whether or not, any of those people have epilepsy themselves. Look and think about yourself the way you were before you found out that you have epilepsy.
If you have any questions about epilepsy and seizures, then please don't hesitate to post them here. There are alot of people on here who, I'm sure, are going to help you. I'm one of them.
Tell us about what you're feeling around the time when you think that your seizures are occurring. We can talk about it and suggest some questions that you'd need to ask your doctor [once you see one of coarse].
Learn and experience what happens, so in the future, you can help someone cope with a life of having epilepsy.
Bruce J
princessmaid,
Having epilepsy isn't easy, but it definitely isn't hard either. I was 18 years old myself when my seizures started, but I didn't know that what I was feeling were seizures. That was 18 years ago. Over the past 11 years, I've gone through alot. Have taken several EEG's & MRI's, a CT, WADA test, and just one year ago this month, I went through the pre-surgical testing with the overall result of it, was that it was too risky to do further surgery because I may loose my speaking abilities completely.
But over the past 4 years, I've learned many things about seizures and epilepsy, by sharing my story with other people with epilepsy, parents with children who have epilepsy, and by reading alot of information in books, websites, at a program and by attending a local support group.
DO NOT make yourself feel helpless. There are well over 2.5 million people with epilepsy, just in the United States alone. Think of this... You see alot of people everywhere, right? See if you can tell whether or not, any of those people have epilepsy themselves. Look and think about yourself the way you were before you found out that you have epilepsy.
If you have any questions about epilepsy and seizures, then please don't hesitate to post them here. There are alot of people on here who, I'm sure, are going to help you. I'm one of them.
Tell us about what you're feeling around the time when you think that your seizures are occurring. We can talk about it and suggest some questions that you'd need to ask your doctor [once you see one of coarse].
Learn and experience what happens, so in the future, you can help someone cope with a life of having epilepsy.
Bruce J