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Appointment. Confused.

Tue, 10/26/2010 - 19:22
Hi, I just want to keep the people up-dated.  So, I went to my appointment today, and the doctor thinks I have ADD.  I have 30 seizures a day, and, yes, some things of ADD do add up.  But Epilepsy just seems like the correct thing.  I don't know.  But I have two more EEG's to take, one this Thursday.  Need to get to the bottom of this.

Comments

Re: Appointment. Confused.

Submitted by zealot on Tue, 2010-10-26 - 20:44

Trent,

This is what I was afraid of.  You must have done some reading to know that you are having seizures.  ADD is a very dangerous misdiagnosis, if you really do have epilepsy because the medications used to treat it all have a significant seizure risk.

Just because the fancy tests are negative doesn't mean you don't have epilepsy, but pray that it's something easier to fix.  You really don't want to have epilepsy, but I think what you want the most is to be "fixed" so that your brain works.

The way you talk though, I suspect you are right, especially because you say that other people with epilepsy understand your symptoms.  Get your doctor to listen to you, examine you, and if you get "lucky," maybe you will have a seizure while he is asking you "do you feel this?"

I was "lucky" enough to have a seizure while being examined by the only decent neurologist I've ever seen.  I didn't know I was having it and would not have had he not been conducting the exam.  He got me the VEEG in two days after that.

That test was a not very funny comedy of errors.  The tech screwed up, the electrodes came loose, they ignored the video evidence, and ruled the epileptiform activity that did show up even with the electrodes loose as artifact.  They then took the lack of a conclusive positive diagnosis to be a positive rule out for epilepsy.

This is a logical fallacy.  Since you say you are a fellow geek, you will understand that just because you can't prove that A is true does not mean the converse, that A is false, is the case.  Unknown means unknown.  There is no law of the excluded middle here. 

This is like data base.  There is true, false, and null.  Null means void or unknown and is neither true nor false.  In data base, if you search for all of your "not trues," your result set will include all of your falses and nulls.  If you search for all of your "not falses," your result set will include all of your trues and nulls.

I know this is a bit counter-intuitive, but it's how the world works.  Doctors are not scientists and they are not logicians.  I don't expect them to be, but they should stop pretending they are and stop passing off logical fallacies as medical diagnoses.  They are killing people this way.

Just stick to your guns.  Why don't you try to write down your symptoms and bring the list to you doc?  That way you can't forget anything.

Also, why don't you try keeping a seizure diary?   I tried, but I coudn't because of the writing thing.  I usually can't write while or soon after my seizures although it depends on what kind and how bad they are.  It also depends on what I'm trying to write.  Writing like this is a conversation so to me, it's more like talking and I don't have a problem with that unless the seizures wander into my left frontal lobe or I've had TCs.

Click the next link to get to my newest post:  Escaped Mental Patient:  Why Can't the Jewish Zealot Epileptic Leper Escape From the Lunacy of the New York Office of Mental Health?

http://psychout.typepad.com/blog/2010/10/escaped-mental-patient-jewish-zealot-epileptic-leper-lunacy-new-york-office-mental-health.html

The link after my name will get you to the blog.

Devorah Zealot Soodak http://psychout.typepad.com/ the zealot needs help!

Trent,

This is what I was afraid of.  You must have done some reading to know that you are having seizures.  ADD is a very dangerous misdiagnosis, if you really do have epilepsy because the medications used to treat it all have a significant seizure risk.

Just because the fancy tests are negative doesn't mean you don't have epilepsy, but pray that it's something easier to fix.  You really don't want to have epilepsy, but I think what you want the most is to be "fixed" so that your brain works.

The way you talk though, I suspect you are right, especially because you say that other people with epilepsy understand your symptoms.  Get your doctor to listen to you, examine you, and if you get "lucky," maybe you will have a seizure while he is asking you "do you feel this?"

I was "lucky" enough to have a seizure while being examined by the only decent neurologist I've ever seen.  I didn't know I was having it and would not have had he not been conducting the exam.  He got me the VEEG in two days after that.

That test was a not very funny comedy of errors.  The tech screwed up, the electrodes came loose, they ignored the video evidence, and ruled the epileptiform activity that did show up even with the electrodes loose as artifact.  They then took the lack of a conclusive positive diagnosis to be a positive rule out for epilepsy.

This is a logical fallacy.  Since you say you are a fellow geek, you will understand that just because you can't prove that A is true does not mean the converse, that A is false, is the case.  Unknown means unknown.  There is no law of the excluded middle here. 

This is like data base.  There is true, false, and null.  Null means void or unknown and is neither true nor false.  In data base, if you search for all of your "not trues," your result set will include all of your falses and nulls.  If you search for all of your "not falses," your result set will include all of your trues and nulls.

I know this is a bit counter-intuitive, but it's how the world works.  Doctors are not scientists and they are not logicians.  I don't expect them to be, but they should stop pretending they are and stop passing off logical fallacies as medical diagnoses.  They are killing people this way.

Just stick to your guns.  Why don't you try to write down your symptoms and bring the list to you doc?  That way you can't forget anything.

Also, why don't you try keeping a seizure diary?   I tried, but I coudn't because of the writing thing.  I usually can't write while or soon after my seizures although it depends on what kind and how bad they are.  It also depends on what I'm trying to write.  Writing like this is a conversation so to me, it's more like talking and I don't have a problem with that unless the seizures wander into my left frontal lobe or I've had TCs.

Click the next link to get to my newest post:  Escaped Mental Patient:  Why Can't the Jewish Zealot Epileptic Leper Escape From the Lunacy of the New York Office of Mental Health?

http://psychout.typepad.com/blog/2010/10/escaped-mental-patient-jewish-zealot-epileptic-leper-lunacy-new-york-office-mental-health.html

The link after my name will get you to the blog.

Devorah Zealot Soodak http://psychout.typepad.com/ the zealot needs help!

Re: Appointment. Confused.

Submitted by trentonbest on Wed, 2010-10-27 - 08:04
Yeah!  People with Epilepsy relate to me.  So I honestly think I have both.  I have signs that match both of these things.  He just didn't think I had Epilepsy after I was hyperventilated.  Didn't have a seizure.  And also because in his career he has never seen a kid my age with Epilepsy, because I got it when I was so young.  I know all the answers will come out soon.  Maybe it will be both.  Let's hope we get this figured out!

Re: Appointment. Confused.

Submitted by zealot on Wed, 2010-10-27 - 08:57

Trent,

The ADD is a symptom.  This is another classic case of psychiatrists turning the symptom into the disease. 

If your doc has never seen someone your age with epilepsy, go find another doctor!  Epilepsy is the most prevalent in infants and young children!

Just because you don't get seizures "on demand" doesn't mean you don't have a problem.  It could be an environmental provocation, which could explain why you don't have seizures in the nice, clean, airconditioned doc's office.

More likely it is that you have seizures deep in the brain where they cannot be detected by surface electrodes.  Please make sure your parents do not allow this doc to prescribe you medications that could worsen your seizures just because he decides you don't have them because he can't image them.

Devorah Zealot Soodak http://psychout.typepad.com/ the zealot needs help!

Trent,

The ADD is a symptom.  This is another classic case of psychiatrists turning the symptom into the disease. 

If your doc has never seen someone your age with epilepsy, go find another doctor!  Epilepsy is the most prevalent in infants and young children!

Just because you don't get seizures "on demand" doesn't mean you don't have a problem.  It could be an environmental provocation, which could explain why you don't have seizures in the nice, clean, airconditioned doc's office.

More likely it is that you have seizures deep in the brain where they cannot be detected by surface electrodes.  Please make sure your parents do not allow this doc to prescribe you medications that could worsen your seizures just because he decides you don't have them because he can't image them.

Devorah Zealot Soodak http://psychout.typepad.com/ the zealot needs help!

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