Sooooooo starting all over

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thornton8000

thornton8000

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Hey my friends,

Starting seeing a new neuro in june and he has been running alot of tests, (all still coming back normal) and even though the last neuro I saw said "seizures and PNES" my new one said since my 12 hour VEEG, came back clear i more than likely have only PNES, and he stated that well until you see the specialist that i know i want you to stop your keppra, my wife and I both balked at him, and then he said its up to you.

Well I choose to stop it to prove a point and after a day or so my SPS, started up again, migraines with urination upon waking, and see the specialist 10/31/12 so needless to say i'm going to have alot of journal for this new guy to read.

Lately it seems that everytime I am able to make 2 steps forward i get sent back to square 1 everytime. The kicker is that when taking the keppra my seizures stop and maintain to 1-2 every 14 days if not less but now that i've stopped it based on his original thought they are daily the nocturnal seizures are hitting hard and with a vengance.

Sorry for the rant and complain but I needed to vent to others whom can relate.

Hope everyone has a great day.

Mike
 
thornton8000

No need to be sorry, you know that. You intend giving the new guy a bit of light reading, nice idea. I know what you feel and I hope this stops soon for you. Be carefull.
 
Mike, any chance you can move up your appointment? It seems a long way off, and a long time to suffer from the untreated seizures. Can you go back on the Keppra while you're waiting?
 
Thanks all,
Nakamova, i possible could still have almost a months worth of keppra left, and this morning was not a fun one, had a seizure with total bowel loss and now i also think i got sick form the kids (never fun) but will prob start today with the meds anyway to start feeling better.

Thanks everyone,

mike
 
I know exactly what if feels like to take two steps forward and then two steps back.
Every neurologist has a different opinion and every neurologist thinks they are bang on right.

I hope getting off the Keppra slowing isn't too trippy for you. I had such a rough time with that.
You make sure you take a detailed journal and I hope he reads it in detail.
It really seems to be the new trend that if the EEG shows nothing then it has to be psychogenic which is absolutely not true. It's like they are saying tests are the be all end all. If that was true then they are saying that there is no human factor involved. I don't get it and it enrages me. When is human instinct involved? When is human interpretation involved? Or, excuse me, have they totally figured out the human brain now? Because I missed that news report.

Good luck in your journey. You hang on. Believe in yourself.
 
Sorry that your suffering through this mess. Good to see you back. I agree w/LJ Bain- that if EEGS shows nothing that it seems to be the trend to say it has to be psychogenic. I don't think enough drs really want to investigate & get to the real root of problems. And its hard finding the right dr.

Stay strong!
 
I'm on my 3rd neuro, and he's great he wants to start all over nothing form the old doc's is being brought in, he agrees something is going on but since all my eeg and veeg and aeeg were clear that they have to be PNES.
He's also helping me figure out my other neurological issues since my symptoms say one thing but the tests say the other until we start ruling things out he's confused as to what it is.
Thanks everyone here you've been awesome!

Mike
 
I'm sorry to hear what you are through,

I hop you can get a appT. sooner. I hate it when people have to suffer.
 
That's good then that you like this new doc-finding a dr you trust & having a good relationship is so important. Just makes you feel better.
 
Found out a little more about my seizure this morning, my wife says it happened a little before 3am when she got up to help the baby, and when she came back she thought something was off (smell) but wasnt sure if it was due to an accident or passing gas. When these things happen i get so embarassed, thankfully this happened at home and not somewhere else where i could not take care of it properly.

Thank you everyone for being so great and being a great venting/starting/jumping point for inderstanding and help.

Mike
 
Going through the same stuff as you man. They want to go back on what they said, which I figured would happen. I hope this gets resolved and they stop yanking you around.
 
WHenever anyone is getting the runaround I hope at least you are getting to some respect.
I know what it's like to be treated like nothing and like dirt when the words "psychogenic" get out there. It's like, I AM still in the room you know. Look me in the eye!
Sorry, that's my little vent.
I'm glad that they are addressing your neurological issues even if the tests aren't showing epileptic. The brain is a complicated thing and certainly there are others that can be going on. I hope you get the help that you need.
It is quite the ride, isn't it? Stay strong!
 
Thank you, i get respect, but i wish they'd listen that hey the meds help they dont stop them but they make it so i have alot less than without them, and since PNES doesnt respond to AED'S but regular seizures do should that tell you something?
but oh well i see a PNES specialist at the end of the month and will see waht he says.

Thanks gang other thoughts and ideas pls chime in

mike
 
I'm still new here and newly diagnosed so maybe don't understand and am missing something but...

Why is this doctor removing your diagnosis when your tests should be good (shouldn't they?) while you are on medication AND this medication has been working?

If you can't stay with the doctor who prescribed it can't you find someone who will accept the diagnosis or your WORD that Keppra works for you-- WHATEVER the diagnosis?

If he doesn't accept that, why will he accept a journal? Or do you mean to repeat tests after you are off medicine?

Still... I probably would never be willing to do that. Having had to build up and withdraw from lots fo things that never helped me in the past I would fight tooth and nail to stay on something that did help me.

I guess I'm just confused and worried about you.
 
Thanks giveasmile,
I couldnt stay with the old one he fired me (long story) the new one does take my journal now in the 40 pages length! :D
the new neuro refilled my script of keppra and im taking it like i used to since my seizures were getting so bad, and now they are finally getting back to "normal".
And also giveasmile he wants to rule out other medical issues seeing if the keppra is/was the cause of the other issues that have been acting up. Except i was having the symptoms he is trying to figure out before i was on any meds, but he is a wonderful neuro he just wants to start a square 1 to make sure nothing was missed and we know exactly where we are going.

Mike
 
I've been fired from neurologists too. I didn't know they could do that until it happened to me. I'm glad this one is refilling your Keppra since it obviously is helping. This one sounds like a keeper.
 
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