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Have Questions....
Sat, 10/21/2006 - 15:17Topic: New to Epilepsy.com
After 3 years of numerous Dr.'s EEG's, MRI.......I was diagnosed in June with a " 90% Clinical diagnosis of Epilepsy". This Dr was my second Neurologist and I was there for a " Second Opinion" though my Neurologist that referred me had not mentioned " Epilepsy " to me.
This Dr told me that I was to concider myself Epileptic and left it at that. I asked questions regarding caring for my then 3 month old son and older children. I was told to " Use caution and common sense."
I left with no answers to my three year search for answers. Knowing nothing at all about Epilepsy I convinced myself that the Diagnosis was wrong.....if the Dr was concerned he would set up a plan, right?
My symptoms I have now seen on this web site and my view of Epilepsy shows me that it is not what I thought it was.
I can usually feel it coming on and my speech starts to slur, I get almost like tunnel vision and feel very disconnected. My mind seems to race and I try to think of my children's names but I cannot recall them. I think I can say what I am thinking though to those around me it comes out in garble. During one of these I was on the phone and the person I was speaking to thought I was "drunk". After it seems to have ended I am hesitant to refer to people by name as it seems to me like I might say the wrong name.
This has happened numerous times though I have always seemed to be aware that it is happening.
I have never had convulsions, does this mean I might eventually?
A couple of times I have felt like one "is coming on" though it seems to pass.
My EEG's have not shown anything.....does this mean the diagnosis could be wrong?
Should my Dr not have gone into more detail and offered me options?
I am very upset with my Medical care and have no idea what I need to do. I am nervous while alone with my children as I do not know if these may progress or not.
Any advise?????
L
Comments
Hi L, I've coped with E
Submitted by solis on Sat, 2006-10-21 - 21:35
Hi L,
I've coped with E since I was three = a very, very loooooong time.(My children are now 21& 23).
So let me try to help you.
(Btw.. I have never had convulsions either.)
Firstly: I'd (respectfully) suggest you search to see if you can find an epileptologist as opposed to a plain neurologist.
See, a neurologist specialzes of 'all' medical problems relative to both the brain and the spinal cord; whereas, an epileptologist is a nerurologist that has been further educated in, and that focuses on treatment of epilepsy.
To find an epeileptologist in your area, go to www.epilepsy.com ..top of the page & third from the right.
I saw neurologists all my life until after going though all of them at the hospital (where my GP practiced) I was sent to an epileptologist (I didn't know such existed).
The result?
Within months I was completely controlled - for the first time in my entire life.
Your discription makes me think of partial seizures.. simple and perhaps complex (with complex it's typical for no memory of the event to occur).
Let me give you some pages:
An in-depth understanding of seizures:
http://www.epilepsy.com/web/animation.php?swf=what_is
Types of Seizures
http://www.epilepsy.com/epilepsy/types_seizures.html
(Actually there are over 40 types, these are just the most common)
Simple Partials
http://www.epilepsy.com/epilepsy/seizure_simplepartial.html
Complex Partials
http://www.epilepsy.com/epilepsy/seizure_complexpartial.html
I had simple & complex partials during the time I was raising my 2 boys..yet, I had no worries. Yet, perhaps that was due to the fact I'd had them so long I knew exactly what to expect.
Please consider yourself invited to come to the chat room.
Many great people (like Maggie :) are there, and one feels far less alone after making friends with others that 'understand'.
~sol
Re: Have Questions....
Submitted by maggie on Sat, 2006-10-21 - 18:45
Welcome Laine,You have come to a very good site for getting some answers and support from people that have been there.I,myself am also fed up with the medical field.It has been 3yrs for me and many Drs.with all the testing.The testing comes back normal.OK....so why the seizures,I ask?? No questions answered.They have pushed me off to 2 different psychs and they ask why I am at their office....Well cause the neuro or epileptologist sent me here.So I go back for another veeg in Dec.The only drug I take is Klonopin which is for seizures/anxiety.I'm truely sorry that you have gotten no answers,just don't give up.I do believe your doctor should do a follow up and put you on meds for the seizures your having.I also hope to get some answers.Some doctors just don't get it!They have no idea how we feel.Good luck and your in my thoughts and prayers