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

NOT a good Monday

So I had an okay morning. It was actually fun.

And I took a nap at lunch. Which was also fun.

Except at the end, because I fell off the bed as I was rolling over onto my back. And, as my head has been telling me, it was the first to hit the ground. It's got a pretty good sized purple goose egg on the back.

And, I had to be taken to the ER to get checked out. In an ambulance. During lunch time. The trip through the courtyard on a gurney strapped to a backboard in a C-collar was....fun. It's always comforting to hear kids laughing at you. And no, I didn't assume this....the laughing shortly stopped after a boy said to a girl "Stop laughing, that's not funny, she could be hurt!"

Ya know.

Anyways, luckily I only missed 3 periods. And I'll be back in school tomorrow.

Okay now. I'll be back tomorrow to tell you how my day went =)

~Bri

Down I go

Today, this morning actually, I had an attack while walking down the stairs. I hit my hand pretty hard, and twisted my back. I'm in a bit of pain right now =P

*sigh*

And I know I haven't posted in a while, nearly a week this time. I just haven't had the motivation or energy. I'm still getting caught up from missing 9 days recently.

Anyways, I've found out that I won't need to go off my medication for Stanford, because they aren't doing a sleep study. I just have to have the lumbar puncture done.

We'll be down there for like...3 days? Maybe a few more.

So yeah.

~Bri

UW Dermatology

So, I had my appointment with University of Washington Dermatology today. It went well. The doctor wasn't able to give us a solid answer, but he pointed us in a few directions. And he ended up referring us to a doctor at Stanford, because we'll be down there in October. So...yup.

One of the disorders he talked about is called "Periodic Nail Shedding" It's exactly what it sounds like. And the last paper written on it was in 1981. So, not much known about it at all.

Anyways, he did discuss nail care with us, what to do to help the nails grow back. He said that my big toe on my left foot has probably just had too much scarring to the matrix, so it's not likely to grow a nail back. One less to fall off I guess.

Umm...today at school was good. I have a para now, she's super nice. And I got to meet with my PT, and we discussed my evacuation plans in case there is a fire or whatever before an official plan is made.

Pretty much. Got caught up on my homework, which was kinda difficult, but it's done. I'm going to bed like...now.

~Bri

YES YES YES!!!

OMG. I've been OFFICIALLY diagnosed with Narcolepsy w/Cataplexy!!!

SO exciting!

So. My appointment with Dr. H went well, as you can see. He also agreed to the dose increase, I now have 15's and no more cutting to size needed. And he said something cool.

He did a paper a long while ago. In it, they studied kids who presented with full blown narcolepsy. Looking into their history, it showed that they didn't have symptoms present typical or all at once, like most doctors think it should. He said that the study concluded that kids who develop narcolepsy generally experience spotty symptoms, or the symptoms come and go at first.

So then he said that he doesn't feel that my symptoms are that uncommon in how they're presenting.

Okay. SO I'm excited.

And one thing I've been worrying about lately is the fact that when I'm 18, I'm no longer considered Pediatric with MB. But he said that because I'm already a patient, that he can continue seeing me until I turn 21. So that's one less stress.

Yay. My day is going so well, and I haven't even seen Kris yet =)

More later,

~Bri

Med update.

So....

Yesterday, I tried an up-ed dose of meds. I went from a 10 mg/9 hours patch to a 15 mg/9 hours patch. Just for a day to see if it would go better this time, because we tried last time with....scary results. We aren't sure if the bad attacks were caused by the higher dose, or if it's because of high emotion at the time, but anyways, we've waited a while before we go up.

It turned out great though. I was still in need of a nap, but between the nap and bedtime I didn't feel completely exhausted like I've been for the past month or so. It sucks that my EDS is getting worse, but at least the first day on new med dose didn't absolutely overtake my body.

Today Roo went home, and I didn't use meds. So I was more floppy, more tired. But even with that I was able to get some organizing I've been wanting to do done.
I was looking at my old journals/notebooks from previous grades, and found one from when I was in 6th grade in MN. It was fun looking at it and seeing how my writing style and penmanship have improved.

And. Ash and I are going to go for a walk tomorrow, so. I'm happy about that.

Yup.

~Bri

I'm positive.

We just got the results back.

I'm positive for the HLA marker that 90% of people with Narcolepsy with Cataplexy have. Now, 20% of the general population have it as well, so it's not a diagnostic test for sure. But, there is the possibility of me having Narcolepsy w/Cataplexy...

I think now from here is the spinal tap to test the level of hypocretin in my CFS.

I'm scared out of my mind.

But, one step at a time.

That's all for now I think,

~Bri

Communication with Stanford

Today, after my appointment with Dr. H, we got a call back from Stanford.

We talked a lot but it basically comes down to this. I'll have a blood test to see if the HLA marker is present. If it is, either we'll travel to Stanford, or maybe we'll be able to see a doctor up here who will do the spinal to test the hypocretin levels. My appointment at Stanford isn't until late October, so if we can get these things done before hand, it's much more info before we go. I already have an appointment with Dr. S on Monday for the blood test.

So.

My appointment with Dr. H went well, he agreed to keep me on the same meds, but also lets us know there are a few other drugs out there that might work if we ever want to try them.
When we told him that we had thought about going to Stanford his only question was "When are you going?"

=D

And, we found something else out about why I might be having attacks in the bathroom.
We found out earlier this month that it's not uncommon for people (with N/C) to have episodes while in public bathrooms.

But Dr. H said that there is some reaction that happens (or can happen) when you don't use the bathroom as often, then empty your bladder. He said in normal people it can cause fainting (like, if you didn't use the toilet for 10+ hours, then emptied your bladder, there is a possibility of you fainting.)
He said that it causes a reaction (parasympathetic discharge? reaction?) similar to you laughing. Basically he said it made sense. Only when he said it it was much less complicated =)

BUT, we've found out that if I go more frequently, I haven't been having attacks in the bathroom.

Which means, I need to pee more often basically.

So yeah. Good good.

Umm, I don't think there is anything going on later this weekend.

Yup.

~Bri

So folks, we finally got news today.

UW sided with Children's. I'm having blood drawn for Lupus next week, but I have a funny feeling that's going to be negative.
They also told us that in order to have the spinal done, I have to go to either Stanford or Mayo, they can't do it.
We know we might have to travel now. But maybe my daddy will be able to figure something out here. If not, travel then.

Sheesh. I just wish I didn't have to deal with this. Don't we all though!

On the bright side, today I went back to school for the first time in almost 4 months!!! Even though I'll only have like, 15 days left, it's a start! I'm currently taking Daytrana which is a stimulant and it's cut down my attacks drastically.

Well that's all I have to ramble about

~Bri

We HAVE NOT found the right doctor.

I'm not going to bash on the doctor in particular, just their obvious lack in knowledge with not only Cataplexy but also Conversion Disorder. Yes, Conversion Disorder.

You see, my sleep study showed that I have no Narcolepsy. It also showed that I was awake during attacks of Cataplexy, or CD as the doctor now thinks.

Why does this post seem to be off to a bitter, bitter start? Well, it's for two reasons.

One, due to the doctor's words last week, that, "Without a doubt my symptoms were Cataplexy" I was hopeful. Desperately hopeful that after so long we had found the doctor who could help us get the care I need. Unfortunately, that's not true, and I feel it was wrong of the doctor to say that because it gave my parents and I false hope. Now some may say that maybe I shouldn't have believed it, but...I didn't think it was wrong to take that and HOPE.

Two, the doctor showed a lack of knowledge on Cataplexy, Conversion Disorder, and my medical history, none of which impress me.

I'd like to quote this article for some info.

"The sudden loss of muscle tone in cataplexy is similar to rapid eye movement (REM) -associated muscle atonia during sleep , but it is occurring during wakefulness."

"A cataplectic attack is sudden in onset and is localized to a specific muscle group or parts of the body. The subject is lucid during this attack and it is important to recognize that consciousness is always maintained at the onset of cataplexy. "

Both of these pieces state that the person with Cataplexy remains awake during the attack. It does say in the article that if an attack progresses to further loss of muscle tone and longer periods, then the person may experience sleepiness, REM sleep, and hallucinations. I won't fight the doctor there, as I have experienced all those things during long attacks. I've even gone through a full night still in an attack. We know this because "the onset of cataplexy is associated with the absence of deep tendon reflexes that comes back with the return of normal muscle tone. This is a simple test that differentiates cataplexy from other drop-attacks."

And I've had multiple doctors/EMS/other people note that I have no deep-tendon reflex during an episode. That's not something you can make go away people.

Here again, it states that people do not loose consciousness during an episode of Cataplexy, they simply cannot move.

http://www.narcolepsy-symptom-treatment.org/cataplexy_narcolepsy_symptom.htm

I'm bringing up all this info because the doctor said there were two reasons I didn't, couldn't have Cataplexy.
Because I stayed awake during the episode, and because I didn't loose full muscle tone.
They tested this not while I was in an attack, but as I was coming around from one. The tech captured on video me coming out of the attack, and when she put my arm over my head and let it fall, I pulled my arm from my face.
This drop test is a good way to see if someone has control over their movements, because your body won't let your arm hit your face. The only way it will hit your face is A) Your muscle tone is compromised somehow; either your unconscious or you can't control your muscles, or B) You purposely let it hit your face.

Well, at that point when she did the drop test, I did have minor control over my muscles again, in fact I was trying to talk to her. So no, my arm didn't hit my face. However, if you do it while I'm actually in the attack, it'll hit my face, or head, or something. I've gotten bruised lips and eyes from my hand hitting my face, because I couldn't pull it away.

Now Conversion Disorder is the new answer. This brings me to my other two problems with the doc. If she had read my history, she would know that a diagnosis of Conversion Disorder was made last year and ruled out. Their advice? Start seeing a psychiatrist.
NEWS FLASH!
I've been seeing one since June. He happens to be the one that made that diagnosis of Conversion Disorder last year. He was also the one who revoked it!
So why are we going back to this?

These are the criteria for making a diagnosis of Conversion Disorder taken from this site.

"Diagnostic criteria for conversion disorder as defined in the DSM-IV are as follows:

• One or more symptoms or deficits are present that affect voluntary motor or sensory function that suggest a neurological or other general medical condition.
• Psychological factors are judged to be associated with the symptom or deficit because conflicts or other stressors precede the initiation or exacerbation of the symptom or deficit.
• The symptom or deficit is not intentionally produced or feigned (as in factitious disorder or malingering).
• The symptom or deficit, after appropriate investigation, cannot be explained fully by a general medical condition, the direct effects of a substance, or as a culturally sanctioned behavior or experience.
• The symptom or deficit causes clinically significant distress or impairment in social, occupational, or other important areas of functioning or warrants medical evaluation.
• The symptom or deficit is not limited to pain or sexual dysfunction, does not occur exclusively during the course of somatization disorder, and is not better accounted for by another mental disorder.

According to psychodynamic theory, conversion symptoms develop to defend against unacceptable impulses. The primary gain, that is to say the purpose of a conversion symptom is to bind anxiety and keep a conflict internal. A fairly transparent example would be leg paralysis after an equestrian competitor is thrown from his or her horse. The symptom has a symbolic value that is a representation and partial solution of a deep-seated psychological conflict: to avoid running away like a coward, and yet to avoid being thrown again.

According to learning theory, conversion disorder symptoms are a learned maladaptive response to stress. Patients achieve secondary gain by avoiding activities that are particularly offensive to them, thereby gaining support from family and friends, which otherwise may not be offered."

Let's recap why he ruled it out.
-The attacks do affect my voluntary motor function, but also my involuntary motor function, i.e. deep-tendon reflex.
-The ONLY prior trauma the doctors have that precede the initiation or exacerbation of the symptoms is me watching my dad burn when I was 4. Yes, it was mental and emotionally scarring. Yes, I still have nightmares.

Do I pass out if in a TV show a guy is on fire and then my family pays attention to me where normally they wouldn't? No. So how does it fit?

"True conversion reaction is rare. Predisposing factors include extreme psychosocial stress, and perhaps, rural upbringing."

It doesn't fit.

So now....now we wait. We start looking elsewhere.
I firmly believe that Cataplexy is the best fit, the best condition that explains my symptoms. I'm not saying this because I don't like the diagnosis of Conversion Disorder. I even like it better! It means that Ash won't have these issues. It means that it should've been fixed. But it wasn't.
If a doctor were to say, "You know, I really don't think this is Cataplexy, and here's why, and this condition really does fit better," and then I follow treatment plans and suddenly I'm improving like I should, then COOL!

But if we go back to CD, then we're back to going nowhere. And BTW I am staying on the treatment for Cataplexy. Want to know why? It's working!
And so we keep looking until we find a doctor that has knowledge on the subject, and that can give us an answer.

Bye for now,
~Bri

Sleep Study

So I just got back from my sleep study. And even though I had interwebs, I was on my mom's laptop and didn't want to log into too much random stuff so I didn't come on here.

It seems to have gone well in the sense that I didn't sleep solidly through the night and I managed to fall asleep at every nap opportunity, which are both positive indicators of Narcolepsy.

So, good, bad, whatever you want to call it.

And during my last nap while Mom was bringing stuff down to the car, she met this lady in the elevator.
So Lady had two Italian Greyhounds and two little children. One was Autistic, the other had a dog as a companion animal for an undisclosed reason. Since we've been trying to find SOMEONE who will help us get a service dog, even trained just to stay with me during an episode for comfort and pick up things while I'm in my chair, Mom inquired as to where Lady got the dogs. The Lady informed Mom that she herself had trained them, and had trained multiple other service dogs in the past.

Well, so that was cool. Even cooler was the Lady's understanding of the difficulty finding an affordable organization that ALSO provides the services you need AND will work in your age group. So she being the angel she was, she dug a notepad out of her purse, gave my mom her name and number, and told mom that when we were ready to train, to contact her.
She is willing to help us train our own service dog. Of course we'll pay her, but I doubt the fees will be $15,000 plus travel, room, and food. And yearly checkups, and and and.

So. Yes, good day indeed. I even have a cup of coffee. This day just keeps getting better!

~Bri

We finally found the right doctor!

So wow. It's been 7 days since I posted.
A rough 7 days.

So Saturday was actually really really good. I didn't have any of the full body attacks, but I did have two minor localized attacks. I also got to go out with Ms. E for coffee which was nice.

Sunday was okay until about 6 o'clock, when I woke up from my evening nap. I couldn't move my legs, so I had to use the chair until bedtime.

Monday. Wow, Monday was rough. So when I woke up, I was starting into a full body attack.
Brandon and Tori were home, but it was rough to say the least. That one lasted until probably 2?
Then around 2:30-ish I had a fugue state, left the house, wandered, and collapsed into another full body attack. I was taken to MB, and was there for another 9 hour trip. We got home at like...11?

Tuesday was....okay-ish. I think. I don't remember what happened Tuesday. Mostly recovering form the long attacks, relaxing strained muscles, and such.

Wednesday was good. I moved back down to the 10's which has been the right choice. I went with Bro to go get his trailer so he could go get his new car, then home. Then sleep. lol.

Thursday was a grand day. So first, I had my appointment with the sleep clinic in Bellevue.Everything about it was awesome, except the part where they had daddy make me go out. That sucked a little.
But they listened to us. Actually listened. Sat for 2 hours and listened in fact. The NP, who seems to be our main caregiver and the person we'll be interacting with, was so nice.
After she was done with an extensive history, she called the doctor right away.
Without even two sentences apparently the doctor confirmed what we've know for quite some time. She said without a doubt my symptoms were Cataplexy.
Then, because of a miraculous cancellation, I was able to be scheduled for a sleep study on Sunday, otherwise their next available spot is SEPTEMBER.
Wow, Wow, Wow,

The doctor also said she'd be willing to try a drug called Xyrem. It's main ingredient is GHB. But, it's shown great success treating people who have Cataplexy/Narcolepsy. It basically knocks you out so you get great sleep, then you don't have the same issues in the daytime. Right now, if I miss a nap I have a worse time controlling the attacks, because I'm more susceptible to emotional triggers. Part of the reason I need naps during the day is because I don't sleep well during the night. So if we do try this hopefully it will be the right treatment.

And then Mom, Dad, Tori and I went to Seattle so Dad could finish something at work. Mom and Tori and I got coffee then wandered. Then we went to the marketplace across the street and wandered. Then came home.

And we also found out last week that insurance will cover a rigid frame chair up to 90% up to $1,000 dollars. So if the chair is $1,300, they'll cover $900 of it and we have to cover the rest. Which still isn't bad, because that brings the price of a rigid frame chair from $1,300 to $400 so.

Yeah. Lots of good lately to compensate for the bad.

Bye for now,
~Bri

Going to see Dr. H

I'm going to see Dr. H at 3...I think for a med review. So.
More later.

News from Children's

Today was my appointment with Children's Hospital in Seattle.

Well....it went.

I had an attack as I was being weighed and my height checked. Mom and Dad said the nurse kinda freaked out. I feel sucky for that. Especially because I can't control it. I had a harder time coming around, mostly because I was afraid.

Once all that was over, (I went out a few more times in my chair) I saw the doc. Mostly we just reviewed everything. Then he referred us to a sleep doctor within the system which was AWESOME. Cataplexy is a SLEEP DISORDER. I've seen 6 neurologists at Mary Bridge and although a sleep specialist has been discussed, no one has actually referred us. So this is good.

So. AND, I just got an email from Summit, which is an assistance dog organization in Washington State, so it might be a good option for us!

So.

Bye
~Bri

Yayyy

So I got my EEG off and lived! Only a few reactions to the adhesive used....which is good.

Ummm.....I went to school today!
It was fun, but I had to go lay down in the nurse's office twice today because of a bad headache.

Dr. P reviewed the place in my EEG where my mom had marked a spell, and said that they aren't seizures! Which is good news. He said he thinks that the twitching is part of a migraine condition.

So. yeah.

I couldn't stop yawning yesterday. THAT was annoying.

~Bri

In a soggy mood.

I feel a bit in a soggy mood today.
I didn't get the EEG off, because Dr. P said that there wasn't anything significant.
I'll have it on over the weekend. On Monday we go back to get it off, whether there is anything or not so my head can have a break.

Dr. P said that there may be a simpler explanation than seizures for the 'seizures.'
He said, that the twitches of my arm could be symptoms of a bad migraine, something to do with serotonin? Anyways, we'll get more into that later.

So.

Umm....that's it for today.

~Bri

Ambulatory EEG

I saw my neurologist, and he decided he wanted me to have an ambulatory EEG so we can catch a seizure.

I'll go back in tomorrow so they can upload any info, and if I haven't had a seizure they'll extend the EEG over the weekend. Yuck. I hope I have one tonight lol.

And...yeah. Yesterday I didn't do school, and Tuesday was bleh, I had an attack/seizures so had to come home.

Ummm.....so yeah. Not much else....

Maybe later.

~Bri

Nail bed biopsy

Is a painful, painful thing.
The numbing medication worked thankfully, but whatever she used to stop the bleeding A) Didn't work, and B) Stings soooo badly.
And the numbing medication is still working, so I can't imagine what it will feel like when that wears off.

I will probably be taking a happy pill tonight.

In other news, I got my dress for the Starlight Prom.

I'm very excited.

=D

So.

IDK

~Bri

Blood work, and snow in February

In Washington, in this area. Weird for me....don't know why. Maybe its cause this Sunday it was like....50-ish when my sis and I were drawing in the driveway, and now its snowing.

Anyways. Yeah.

I also met with Dr. H today. I'm changing my medication to the patch.

This one silly.

Hopefully this will help even things out again, and I can't throw this up :^)

The blood work is for my dermatologist, apparently I don't have recent enough labs for the things she needs.

And, I'm still having the seizures, every hour-ish.

So that's where I am.

Byeee

~Bri

Still having them

The seizures. About 1-2 hours apart.

I had the EEG, we don't know if I had a seizure during the test though. I had one directly before as the tech was attaching the electrodes, and I had one shortly after, so we're hoping I did although I probably didn't.

I feel gross....and tired.

I'mmmm

Going to bed.

Soon-ish.

Night
~Bri