22 October 2009

Get ready for a long one!

Okay folks, get settled.

I have been to Stanford and back, in 3 days!

Well, it was an interesting, long, cramped few days.

But, now for the important news!

We met with Dr. Mignot on Wednesday. The first hour and a half was spent giving my history, and filling in or clarifying information my faxed records had provided. After that, the doctor came in. He didn't tell us what we expected to hear, although we should probably expect that now.

He basically said this. Given the information, he was almost 90% sure my LP would come back with normal levels of Hypocretin. He said that some certain things just didn't fit. And, he said the dreaded words. Conversion Disorder. BUT, not in the same way.

The pieces of info that don't fit are the fact that I hurt myself when I fall. Not that I hurt myself, but that I get hurt, that I don't protect myself. Both people with Narcolepsy and people with CD usually try breaking their fall, and I never have been able to. He also said that even with both sleep studies having things go wonky, they should show a sleep architecture of classic Narcolepsy.

But, because I do have the symptoms and the HLA markers, he wanted the LP done. So, down to the procedure room we went.

Now, I'm not exactly a skinny girl. It's well known that LP's are harder on overweight people. So, we expected a bit of difficulty.

The doc performing the LP started numbing the area after cleaning it. I've had problems in the past with accepting local anesthetics, but we always assumed it was due to swelling in the area being anesthetized. We found out that that's not the case. It took a while for the numbing mediation to even work a bit, but I couldn't feel my skin, so the doc started inserting the needle.

I felt everything. Not just pressure, like you're supposed to, but everything. The stress of the pain and having to curl so tightly made me have an attack. When I came back around, a doctor was holding my head and shoulders still. They had taken the first needle out, because it wasn't long enough. The second one they used was longer, and they were able to get between the bones, but not into the space to get the fluid. They decided to stop there, because it was hurting me so much and they couldn't get fluid.

They said that because the local didn't work, and they had a hard time getting into the space to get fluid, I'll need to have a lumber puncture done under sedation with the help of fluoroscopy. It's like a real time x-ray, and will show doctors exactly where to put the needle. Plus, because I'll be sedated, even if the local doesn't work, I won't feel it.

Because Stanford doesn't run the samples every day anyways, as long as we get the procedure done soon and the samples shipped back down, as far as solid proof, we're not set back any.

But, it was disappointing. It was hard to drive all the way down there, for them to say the same things we've heard here, and not even be able to have the spinal done.

Anyways, I'm trying to stay positive. Doctor Mignot said that even if the hypocretin level is normal, he still feels it's worth trying to treat the symptoms. He said three things.

Either it's purely Conversion Disorder, which he has seen before. He said even if it is CD, he would try to treat the symptoms. It's helped past patients and even me, if that's the case.

Second, it's possible that I have a combination of both. Much like people with Epilepsy, people with Narcolepsy/Cataplexy can have psychogenic symptoms, meaning that they aren't faking, but it isn't of a physical cause.

Third, it could be a mutation. He honestly said that. That we don't know enough about the human body to say something is or isn't. That maybe, tied in with my other physical conditions, this is some sort of mutation of the syndrome, and we just don't know.

So yeah. I know this is a little (okay, maybe a lot) jumbled. I'm sleeepy.

But, that's what happened at Stanford. I'll post tomorrow of the rest of our trip down to CA, including how we celebrated my parent's 23 wedding anniversary on the road!

~Bri

3 comments:

Thess said...

Sorry the doctor couldn't really tell what was wrong. Hope they figure it out soon.

:)

Blake said...

Hey Bri.

I am sorry to here about the experience with the LP.

Let us know what you need.

SallyJo said...

Bri - I'm sorry. Well, thats not entirely accurate, I'm kinda pissed for you too. It really takes a strong person to go through this something like this and handle it as well as you are. I am amazed by you, simply amazed.