Update From Nurologist Appointment Today

[JLogefeil]

I went to my appointment today. The doctor was nice, he was older and one of thoes old fashion doctors.
So basically all he did I do a physical exam, witch he said was normal, but he didn't have a little problem getting a reflex from my left knee, he moved my foot still didn't work then moved my foot again and got it but it wasn't that big, it was small. He didn't say anything else about it. What could this mean?
I gave him my seizure tracking log, witness reports, report from when I was a baby from the hospital I went to saying all information about the brain problems I had, and a list of the main seizures and what sytomes apply to me.
He want to see me in 6 weeks so July 30 at 10:00am to see how I'm doing.
He still wants me to take my Keppra and gave me 3 more refills, no other doctor has done that so far, I only get about a one months supply. Is this a good thing or a bad thing he did this? When they do that are they thinking there real because if he didn't think they were real or faked he woulnt have gave me the refills right? Sorry, just so many doctors think there faked or non epileptic.
He also told me to be careful about showering and stuff.

He also wanted me to sign a paper saying its ok for him to get the lab, reports, brain scan reports, and the diagnositic report from the hospital I was at. I didn't want to sign the paper beause I wanted him to do his own work and not base his diagnosis of of that report. (but I did sign the paper)
All the papers i handed him today, they were, seizure tracking log, witness report from both my husband and a few friends, a hospital report from when I was a baby saying stuff about what brain injuires I had, and a letter from my psych. Can he just make a diagnosis From thoes paper? I hope so

One more thing all the test (brain scans,EEG,ekgs,lab, etc) came back normal except one were it said that there was brain waves that looked like suspicious epileptic activity. They did another one and it said that a longer one should be done. I did the longer one and I think it came back normal to.
So that was pretty much it. I hope I get some answers

 

[Silat]

In an undamaged limb, lack of reflexes can indicate damage to the nervous system.

Likely the medicine and refills are a precaution because he hasn't established his diagnosis yet. Be happy you get them though, as there have been people who are denied medication because of a lack of a diagnosis.

What it sounds like he's doing is getting all of your information together, so he can have it all in one place to go over and establish his theory or diagnosis. It's much easier to have former test results in front of him to get an idea of the big picture. Also, likely if he feels he doesn't have enough information, he'll probably recommend further tests, depending on what he wants/needs to know.

He seems like he might be very detail oriented, which is excellent in your case because it's often the little things that get overlooked that matter the most in Neurology.

A side note: It might be better to focus on getting treatment and your seizures under control first, then worrying about a diagnosis later. Controlling the seizures is more important than having a name to identify your problems with, although it makes things a little more emotionally challenging, because it's easier to deal with problems you can identify. However, I believe, and he seems to as well, that it's best to control the problems and symptoms first, then focus on finding the diagnosis. That's probably why you've been given 3 refills.

 

[JLogefeil]

You right I just been having these things for 5 years and been wanting someone else to say what they are because I basically diagnoised myself and just hearing it from a doc will be closer for me, that's all I want.

 

[Silat]

You right I just been having these things for 5 years and been wanting someone else to say what they are because I basically diagnoised myself and just hearing it from a doc will be closer for me, that's all I want.

I know that feeling very well!
Took me 6 years before a doctor finally said "You have Epilepsy".
I certainly hope this Neuro can get you a diagnosis, and things work out well in the long run!

 

[JLogefeil]

Y did it take you so long to get a diagnosis? If you want to talk and not post it on here you can just send me a MSG.

 

[Silat]

Well the MRI and CT's all came back as normal, and only showed a slight size difference between my left and right hippocampus. (Long term memory part of the brain).
They found that to be unrelated to my seizures.
My EEG's were "normal" or "inconclusive" every time, and they were unable to successfully induce a seizure at the hospital during any of them.

For a while, they/we were hoping it was just caused by the late-teen growth spurt because they started at 17, however just recently I went in to the Neurologist. I'd been having problems and my meds weren't working, and I'd kept track in a journal which we went over. Ended up going into a string of partials, partial-complex, and had an absence seizure as well at the office. Then as I went to leave I went into a TC, and they ruled it wasn't psychogenic in nature. It was at that point, after I'd seized in the office, that they saw it themselves first-hand and diagnosed me with Epilepsy. The specific type and origin of it are still unknown, we're working on that, but they're now sure it's E, so at least I have a name to work with.

Yeah, not your normal diagnosis story... :?

 

[JLogefeil]

What are psychogenic? Is that non epileptic?

 

[Silat]

Psychogenic Non-Epileptic Seizure.
P N E S.

If I recall correctly, isn't that what they're saying you have been having?

 

[JLogefeil]

Yes