It's island time - Limbo check in 8/7/2012

[mjan]

Well, do not worry about all that you revealed. I am glad you are so open. But I wonder this, did you say your psychiatrist diagnosed your epilepsy? Really? Did they EVER to a 5 day inpatient video EEG?

Also I do not understand how they got the bipolar dx either. PTSD, and maybe depression/anxiety symptoms, but bipolar? Hmm.. did you ever get a 2nd opinion on both these diagnoses: bipolar and epilepsy?

Concerned..Jan

[journeyman]

No MJAN.

In 1980 all things epileptic were still pretty prehistoric.

They did do a CAT scan. They did an induced seizure EEG, plus a plain old regular EEG. They also did something called a naso-pharangeal probe. They told me it was so that they could get closer to my brain to elicit the source of activity.

"naso-pharangeal" - means nose - "throat - roof of mouth." The inserted up my nose two stiff, curved, brass rods with a ball on each end. Once they were at the back of my throat and into my gag reflex they rotated them upward so that they rested against the back and upper nasal cavaty. (If they had told me what it was I would have walked out.)

They then hooked alligator clips onto the exposed ends, packed my nose with vaseline coated guaze and told me to try to go to sleep !!! They did find the source.

NOW YOU KNOW WHAT I MEANT BY PREHISTORIC. p.s. they do not use these any more with the advent of the MRI.

That was high-tech back then. They were able to find the source in my left temporal lobe - not that made any difference in medication treatment.

So - I will be deeply discussing any further tx or tests with my Neuro's BEFORE it occurs. I think that I am adequately medicated for seizure activity and the need to look to another source.

See my latest post in Area 51 lounge, "cane in the pool". I think they need to rule=out "just clumsy."

Dave Tampa, FL
"Journeyman"

[mjan]

In 1980 all things epileptic were still pretty prehistoric.

They did do a CAT scan. They did an induced seizure EEG, plus a plain old regular EEG. They also did something called a naso-pharangeal probe. They told me it was so that they could get closer to my brain to elicit the source of activity.

"naso-pharangeal" - means nose - "throat - roof of mouth." The inserted up my nose two stiff, curved, brass rods with a ball on each end. Once they were at the back of my throat and into my gag reflex they rotated them upward so that they rested against the back and upper nasal cavaty. (If they had told me what it was I would have walked out.)

They then hooked alligator clips onto the exposed ends, packed my nose with vaseline coated guaze and told me to try to go to sleep !!! They did find the source.

NOW YOU KNOW WHAT I MEANT BY PREHISTORIC. p.s. they do not use these any more with the advent of the MRI.

That was high-tech back then. They were able to find the source in my left temporal lobe - not that made any difference in medication treatment.

So - I will be deeply discussing any further tx or tests with my Neuro's BEFORE it occurs. I think that I am adequately medicated for seizure activity and the need to look to another source.

See my latest post in Area 51 lounge, "cane in the pool". I think they need to rule=out "just clumsy."

Dave Tampa, FL
"Journeyman"

OMG Dave.. I am so sorry for all you have had to endure. The reason I am so insistent on this, is because, yes I too have temporal lobe lesions and had a well meaning gen neuro say it was seizures and put me on meds that caused serious side effects. He did insist I get to an Epileptologist who did the 5 day video EEg which confirmed although my EEGs are abnormal I do NOT have epilepsy. She also treat MS (now MY ms doc) and so know the conneciton between MS and seizures.

If I were you, I would insist in seeing an Epileptologist and get their opinion. And yes you are taking what seems like a lot of anti-seizure meds but its very typical. My hubby had seizures all his life. I am very aware of those meds. My own mother, who worked for a neuro was also wrong dx with epilepsy BEFORE MRIs and video EEGs and both died from medication toxicity. This just makes me nervous as I too have been wrongly dx with seizure disorder but a well-meaning neuro. I don't blame him, but still. Whew..just want you to have the most accurate diagnoses..okay?

Good luck Thursday.. I have my neuro-psych eval in Oct. My 2nd one. Please feel free to contact me via email if you like.

My very Best to you~

Jan

[minivanmama]

Hi everyone

Sorry i have been away for so long. I have been sick and with sikness comes SX. I am feeling better now and trying to get back to normal.

Lusciousleaves - I hope you are feeling better. I will keep you in my prayers. Lots of (((hugs)))

Minniegirl - I hope your MRI went well and that it will give you some answers. I am sorry that your neuro apt did not go as planed. I hope that when you go back he is better.

Lots of (((hgus)))

2uphoriabunnyfac3 - I hope you are feeing better soon. I hope you can get back to work soon. Lots of (((hugs)))

Mjan - You look great!! Thank you for posting and i hope things are good with you. Lots of (((hugs)))

Journeyman - Thank you for sharing your story. You are blessed with your family.

I am sorry that you are going through so much all at one time. It can be so overwhelming sometimes. I am glad that you and mjan have been talking.

Keep on posting and know that you are prayed for everyday. I pray things go well on thursday with your neuro-psych exam. I had one two years ago so i know how anxious you must be. I know i was.

Lots of (((hugs))) and let us know how your exam went.

Ok time to start a new thread.