Neurologist Visit Update #3

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Appointment to get results of 72-hour portable EEG was yesterday 2/11 (my bad:

in a previous post I said Jan 11). I wanted to have some time to calm down

before I posted here - - OKAY, so here's my post:

Some background: Original visit with Dr. Er-Kai Gao in San Diego CA - my husband

and I explained carefully about 4S. I told him I want an FMRI to see what

part(s) of my brain light up when I'm being triggered. Dr. seemed skeptical but

agreed to start with EEG for diagnosis and to make sure insurance company pays

for further testing. I am reassured by reading my chart later that he

understands this is a reflex, not a thought. He is looking for epilepsy. Fine.

I come back and we do an initial EEG. I come back and learn it shows all normal

function. Dr says we should do portable EEG so I can walk around hooked up to

machine for a few days and get triggered and machine will capture neural

activity but is unsure that insurance will pay for it. Husband says we'll pay.

(Insurance did pay.) WHILE I WAS WAITING to get hooked up for portable EEG, I

ask Dr if EEG will read my limbic system. Dr looks at me like I am trying to

challenge him or something and says yes - will read whole brain. (While being

hooked up initially I asked tech about eye-socket amygdala position and she said

we don't do that. I asked bcuz when I did EEG biofeedback training, we worked a

lot with my amygdala that way. For the next hook-up I asked the tech how we

will get an electrode to stay in my eye socket for 72 hours. He also had no idea

what I was talking about.)

Flashforward to yesterday: Portable EEG shows all normal function. No abnormal

activity even during notations for triggers. Dr mentioned my asking if this

test will read from limbic system and says that area of brain is very very deep

and there was too much artifact (neuro background electrical chatter) in the way

and the only way to read it is to put in a probe. I say fine - where do we go

for that? He chuckled and said no, we should try mood-stabilizing drugs used

for epileptics. THE WHOLE TIME he was talking with us he was clearing his

throat. I told him " hook me up now: I'll sit real still and you keep clearing

your throat. You'll see in my brain how much I want to kill you right now. " He

laughed a little.

I told him I am not interested in meds: we found no epilepsy. When can we do

the FMRI? He said he has no access to FMRI machine. I just stared at him and

then looked at my husband who was kinda' red in the face. I said " What!? " The

Dr. explained that FMRI is only for research and not for diagnostic. " SO WHAT

THE EFF AM I DOING HERE? " I screamed to myself while the Dr cleared his throat a

few more times. My husband mimed to me to get the Rx so we don't have to come

back to get it at a later date (another $65). My hands were in fists while I

asked him about the prescriptions. He said again we'd have to be careful because

one of them (Depakote) can cause hair loss and weight gain and the other one -

the one he prefered (Lamictal) had to be administered very carefully. I must

have looked as upset as felt because he came up with a new suggestion: I would

come into the office and sit very still and quietly in the little EEG room for

up to 6 hours while my husband or the Dr or whoever comes in and triggers me. I

laughed at him: you can't trigger me if I lknow it's coming!!! He walked us

back and showed us the room. I said it could work if the door was left open and

if and if and if . . . and he said again we'd have to pay for it if insurance

won't.

So I know that men (especially foreign-born men) can sometimes be very

uncomfortable with bright women. And I know that Doctors sometimes have huge

egos. But I also know that when a Doctor talks over me when I am trying to

explain my symptoms I can get extremely pissed off and that's an improvement

over being intimidated. So good for me.

And I'm close to tears again: I don't really want to do this next EEG because it

may not show anything because he's looking in the wrong places and he's looking

the wrong way. And then the insurance company might shut me off because there is

no diagnosis and therefore nothing to treat and nothing to look for. There's a

chance something will show up but what does this Dr have in his arsenal to

diagnose it? Or treat it? Why did he even agree to try to help? Aaargh!! 43

years of rage and panic is already certainly leading me to an early grave. I'm

not sure this frustration at not being heard is doing me any good.

But I cannot just sit back and do nothing. I have to look for answers. I have

4s in a rather severe way - I've got it bad!!! And I think of the parents on

this site and others who are trying to help their children. And I think of the

parents who were like mine who beat the crap outta' me for reacting to and/or

for making any noise. And I think of the people who haven't found our community

yet. If I can't do good with all the bad I know, there wasn't much use in

surviving it, is there? What's next? Anybody from San Diego wanna' go see this

guy? Can you get hooked up and sit very very still and get triggered on

purpose? Like no eye-blinking and no teeth grinding and no movement at all. I

think if you lie down in a recliner with your eyes closed in your favorite

trigger-hell in might work.

Thank you for letting me rant. If you already closed out the post, thank you

for reading as much as you did.