YES! A diagnosis!

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tam bam

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I finally once and for all officially belong to this forum! I have been diagnosed tonight with Frontal Lobe Epilepsy. My husband asked me why am I so happy about this and I said I am not happy about having epilepsy just that I finally have a name for my condition and that I am not crazy and can finally stop looking for answers. Guys I am so glad that I have been diagnosed finally. It has been a long and hard road and now I can start the road to getting some REAL HELP. I am crying as I write this now. This is so emotional for me right now.

My neurologist and I spoke this evening on the phone and he went back and reviewed my VEEG (when we last meet he told me my VEEG was normal) and he stated that I was sitting on the edge of the bed in the hospital room and I extended my arms out and then paused, made a mouth movement with no noise for three seconds and then that is when the abnormality showed on the EEG. He missed it when he first viewed the VEEG. I thought OMG!!!! I am so glad I have a neurologist who believes me now and doesn't think I am just totally nuts.

Also, he has upped my meds and stated if he cannot get my seizures under more control then he is going to refer me to an Epileptologist at Emory University. This Epileptologist is not there yet but he is coming from Birmingham, Alabama and he is going to be in charge of the Epilepsy Center at Emory so I guess he must be good. I am just glad to have a doctor on my side now and not try to take advantage of me (take my money and not help) so that is good.

I look am so glad to be with this forum all of you are great and I look forward to staying here for a long time.

tam bam
 
Welcome to the club tam bam! -- a mixed blessing for sure but we are happy to have you and happy that you've got a diagnosis and a doctor that's working for you.
 
Hi Tam Bam, and congratulations on finally getting a diagnosis! I totally understand what a relief this is for you as there is nothing worse than knowing in yourself that there is something wrong and no one giving you any answers or the wrong answer. Even if the final answer is not what we would choose for ourselves, it is at least a starting point for treatment and hopefully an improvement in health will quickly follow.
 
Welll, I'm

both happy and sad for ya, tam bam!! Happy that you can finally feel the peace that you needed, but sad that the diagnosis is what it is. With any luck, your neuro will be able to get things sorted out for you.....

Take care!

Meetz
:rock:
 
They taught me the secret handshake, so I guess that means I got to teach it to you!

*teaches handshake* see not that hard!

Well welcome to the club, at least thats a postive aspect!

Have a great night!

*does secret handshake*
 
It is good to have answers... as long as they make sense.
I am glad that we all can be a positive support system for you, TB.
 
I am happy for you getting a diagnosis now. I know how it feels to know really know what's going on. I've been diagnosed since the age of 6, having complex partial seizures. But because I was so little- my seizures were quite small, I didnt really have too many troubles with them until they became longer and more complex I guess you could say. So I had the testing and was re-daignosed at 13, started treatment and then quite after a few years- due to side-effects. Then I was re-daignosed again at the age of 23 and started regular treatments as an adult. My seizures had gotten worse while in college- not eating well, sleep schedules way off, and lots of stress. Stress doesn't cause seizures for me- but its surely doesn't help at all.

Anyways- the EEGs in the office weren't really showing much- some photic driving responces, a few spike and waves but nothing major. So neurologist asked for me to have an AEEG, one you wear. So on my last week in college, I had to wear this special looking machine with lots of pretty colored wires- to school!
My interpreters and teachers where like... "What is up with her!?" I explained to my teachers what it was before classes- just so they know what's up.
It picked up spikes and waves and seizures that confirmed the diagnosis of Complex partial seizures. Its really hard to pick them up on EEGs a lot, specially when the EEGs are only 15-20min. I had mine for 3 days.

Anyways- glad you now know what's going on. Now you can look at treatment options and have a peice of mind knowing that you have a real medical condition that is causing troubles for you. Now you know it's your brain causing it and that you can learn ways to take care of it- and yourself. I hope that you're seizures respond well to meds or other treatments.
Sounds like you are brave already- stay strong.

Happy to hear you're satisfied with your diagnosis and not needing to guess or struggle with what's wrong, and not knowing. Now you know.

Take care,
Crystal
 
I know being diagnosed with E isn't a dream come true, but it must be such a relief to have an answer, and to be believed, instead of being told "I don't know" and "it's all in your head". You now have a name for what you experience and alternative actions you can take to help yourself, along with meds.

Here's keeping my fingers crossed for you that meds will help.
 
Tam bam,

Welcome home. I hope your dr. will be able to get your seizures under control, but if not then an epileptologist will be better for you after all you've been thru. Plus they know their "stuff" better than a neurologist.
 
Thanks to everyone on this forum. I love all of you! I have woken up to a brand new day and yes I do feel like I have more courage today and a better outlook on life. I will be honest I felt depressed for years because I did not know what was wrong with me. It is the lowest of the low. I never want to go back to that hell. Thanks to everyone. I hope to be here for a while and learn how to live with epilepsy. I am not happy to have this but I will learn how to live with it. My attitude is much better now knowing what exacting I am battling and now knowing that I have all of you and a doctor who believes me.

tam bam
 
Hey tam bam ! I am v happy for you its a step foward..I am so glad you are going to be ok !

For me I felt relieved ALSO when I got my diagnosis, becuase some seizures are weird... you dont even know they are seizures at first...

I gotta warn you. I got my diagnosis a few months ago, but its become increasingly difficult to accept it, even though it was a relief at first. I think Im going through the whole... process thing.....

Right now I feel very consumed by epilepsy. this is becuase Im constantly thinking about when to next take my meds.. having to make app's///having to call UCLA to see where I am on the wait for neuro there each day...otherwise I might get dropped to the way-side... keeping seizure diaries.

I just started seeing my therapist again properly, and I am going to discuss with her next week about getting some sort of relief from all of this at different points during the day. I am wanting to be me.....

I feel pretty angry currently and have for a while. Ive also felt pretty worthless to others since its limited my activities to an extent. I have to not do too much.

I am a muscian and was always involved in bands, and was starting to get involved in the worship team a few months ago when things got bad... had to stop that .. the lights were bothering and triggering things.....hoping to get back involved soon.. but scared. Since I did not want them to think I was a flake, I told them about the E, now I wonder if they are going to judge me for it and even let me back on the team so afraid to even see.......

all sorts of things go through my mind.

I hope your day goes well.
 
Hello tam bam,
I am so happy that you have got some answers at last / diagnosis. :woot: We are always here to support you on this site and help you through any emotions etc. Take care
Debbie
:rose:
 
HI, I am so glad that you got your diagnosis. That is better than not knowing..
 
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