Thank you Elizabeth :-) When someone puts fonts in all capitals, it's my understanding it's shouting or yelling. I think when they used the word that I would be capable of murder and on and on they went, that was not about a "concern" it was about harsh judgments and I wonder if I am suited for this group or not.
Let me explain a little further .... to you. I appreciate your softer touch with me :-) I don't respond at all well to shouting, just so the group knows my limitations.
So, I will try again...............................
My biggest problem has been my neurologists. I've been thru three in the past two years due to disputes over quality of care issues. One refused to sign my para transit transportation so I can get off the road because he felt it wasn't in his scope to sign it. I finally found another doctor to sign this and am going in for my interview mid December but it takes another 30 days for approval and another 30 days to mail out the information so I can get disability transportation in my area.
Then with medication, I have been on all the newer generations of medications and I can't tolerate the side effects. I have been asking for Dilantin and Depakote but they won't prescribe this for me which leads me to another issue with them................... Even when I was taking the anti seizure meds, my driving was not restricted by them because I am being treated for atypical complicated classic migraine (migraine with aura). However, the new issue is that the auras are occurring without migraine and coupled with the results of the EEG, there's speculation it may be seizure disorder, per my newest neurologist, but he has not restricted my driving.
I can't get a diagnosis for Temporal Lobe Epilepsy or any other epilepsy for that matter to date. Their thinking has been that this is all migraine, which I disagree. I restrict my driving to only certain hours during the day and only to the grocery store or the post office which is within one mile of home. I am on social security disability and do not make the money to pay for a taxi, nor do I know of anyone to drive me around. I raised what happened to me over the weekend to my psychiatrist and also in my letter to the practice manager and my neurologist, so they will be made aware what happened to me. Monday they will get my letters.
My newest neurologist is the only one who thinks the auras I am having may be linked to Temporal Lobe Epilepsy but he has not diagnosed me, in fact he has numerous papers he has written on mood and Epilepsy, so he is someone I want to work with. The Abilify I am on, lowers the threshold for seizures, or so I just found out when I asked my psychiatrist last week.
I set up a sleep deprived EEG and my neurologists' office manager canceled it due to the fact I have an overdue bill with their company. They won't let me get thru to my neurologist. I had my psychiatrist call him to talk to him about this, we rescheduled at the permission of the neurologist, only to have it canceled again by the office manager. I spoke with the practice manager on Friday and they are defending their position that if I owe any money at all, anyone (not just me) is not allowed to return for treatment or testing.
I set up an appointment with a new neurologist but I can't get in until mid January.
Again, thank you Elizabeth for being kind to me and trying to help.
Debbie
----- Original Message -----
From: Elizabeth Quinn
To: epilepsy@yahoogroups.com
Sent: Sunday, December 05, 2010 4:04 PM
Subject: Re: [epilepsy] Liz, Steve and Jewl
Debbie,
I don't think they were shouting at you, but it was more of a concern. I read what you said, and thought 1) wow, you're like me! and 2) hmmm...does she feel safe to drive?
I know personally, this is a debate I have with myself all the time, and I took myself off the road last year for a bit. My doctor and I at least have an understanding where I have to be totally honest with her so I don't get into trouble.
Driving is a big issue here--we all want everyone to be safe, and we know public transportation isn't available to everyone. I think when we hear you sat in your car and didn't know for how long, it just raises a few red flags.
We obviously can't tell you what to do! Just take some time to get to know us, and I think you'll find a great community here!
elizabeth
----- Original Message -----
[Non-text portions of this message have been removed]
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