JoyAnn

JoyAnn
Colorado

So here I sit, typing mostly with my right hand and it's 3:30 AM CT. Tomorrow - or rather, sometime later today - I have to call the neurologist to book an appt. He took up my case at the hospital last week and said he'd clear something for me. I guess that means neurologists have some control of their schedules after all. The other neurologists in the area (60 mile radius) had a 3.5-5 month wait, and the other works for Kaiser-Permanente, so I can only see him if I have that insurance.

I don't.

We all thought it was seizures or something. Temporal lobe epilepsy. Funniness, clumsiness, little blackouts, memory loss, whatever. Then complex partial seizures. Then a new drug which gave me grand mals (!) and I'm wham bam in the hospital after 4 of them. My friend had to drag me kicking and screaming -- except I couldn't really do that from all the weakness.

Not very fun. At least, I was pretty sure they were grand mals. Only one was witnessed. The rest I figured were in my sleep...I awoke to a wet bed, something that hadn't happened since age 3.

I'm 22. I have a little boy. I'm supposed to be heading to graduate school and also working on a web business with my best friend. I don't need this. Heck, the mystery disease caused so many incompletes this year in school that I'm lucky to get my B.A. by the end of the month! I have/had a 3.6 GPA, and I'm dang near willing to pay someone to finish this - I'll cheat. I don't care! I paid $13,000+ this year for school!

So, hospital. Hours of waiting in an awful triage room. Then I'm in a real room on the ER floor. Then up to the funny unit - the oddball unit, I'm told. Bed is all padded for seizures, nice. I get one hour of sleep.

I get an MRI.
CT Scan.
EEG.
EKG.

Check, check, check, check. All fine, but I know enough about EEGs that they rarely detect seizures anyway and the one I had was not specific to MS symptoms.

I was told by a not so bright (seriously, lady) senior resident at the hospital that the MRI would clear me for MS. And they thought it was probable. I had two docs sitting on my bed to tell me this.

Why?

Because I failed all or most of their neuro phyiscal tests, and after a serious of ten thousand questions, it looked as if I had some episodes before that went away. And they wouldn't let me go home, which was a clear signal of something, considering how full the tiny hospital always is.

Besides, you don't lose sensation in your foot for nothing, or have trouble walking. Not to mention they saw my uvulva (the hangy thing in between your tonsils) pulled to the left. That's abnormal. These two docs, female ones, very nice, are telling me that they're going to find me a neurologist and I'll know in a few hours the result of the MRI that I had 6 hours before.

So all of that waiting, and guess what: NO ONE TOLD ME MY MRI RESULTS!! I waited all day! And I asked my mean nurse a dozen times about it.

And then the next morning I was told it could be hours. But guess what - the night nurse was nice to tell me that my MRI came out clear. So hey - what jerks. This is in my head. Nevermind the fact I went numb and my friend had to lift me to my bed. Thank god I had a visitor the night before.

So I yanked out my IV catheter, hobbled out of there with my things and hitched a ride home like James Bond. Oops; leaving AMA may mean I'm stuck with a huge - and I mean huge - bill.

So is it MS?

They ruled out other things with blood tests and the CT scan, at least.

Then, because I'm that kind of person, I do some research, and find:

1. They can be read wrong.
2. They can be done wrong.
3. I only had a head MRI, no neck or spine. The doc tells me this after I leave the hospital, because I'm double-checking that MS is ruled out.
4. You can have MS before an MRI will detect a lesion.
5. Some lesions are too small and additional MRIs are needed.

I really hope this isn't MS. I hope it's some kind of ... spinal injury that's fixable. I don't know. If the doc does some testing and says, "Probable MS!" I'd be like, great! Okay. Start making plans.

I'm a planner.

Now I have to plan to not wear heels on a date (why am I doing this?) I have on Tuesday so that if I do lose sensation again, I don't break anything and hopefully can hide it some. Besides, you can't drag your left foot and wear heels.

My symptoms started probably around 15 years of age and went away, had a flare at 18-19ish, and then now again at 22, but this is the worst.

I'll go through that later. Right now, I'm in pain from muscle spasms and Klonopin and Vicodin and ibuprofen (taken earlier, though) isn't cutting it. I think the months of epilepsy drugs built a benzo tolerance, which is too bad, because I could use something to help the spasicity.

It's awful. Hours earlier I couldn't fully flex my left hand. And I tried. And I tried to do it with my other and it would just "flop" back in. Then the numbness and weirdness went to pins and then shooting pain...up to my arm...four hours ago.

I guess I'll just hang around and watch a movie until the sitter comes for my son. He's been gone for about three weeks now, and I see him almost daily. He had an overnight with me. This is draining my finances. But I can barely take care of ME, much less lift or chase a toddler. Even last night was exhausting, and he was so clingy. He's sleeping and snoring and stinky from sweat. He's a total night-sweater. I love him. He's my whole heart. Being apart from him hurts the most, and when he does see me, sometimes I'm in bed.

I'm going to get dropped from my health insurance soon (it's my stepmom's) and so I hope some nice Jewish boy comes and marries me soon.

Or I magically improve.

This is strange. Sometimes I forget words. I used to be able to do the LAT crossword in about an hour. I wish I could upload my writing when my hand numbs. I'm right-handed. It's my left now that's bothering me. It's slowly getting better after all these hours. But it's unsteady most of the day.

It never occurred to me that losing your ability to swim is just something you forgot how to do. I mean, who thinks of these things? I noticed it last year. Oh well, after Judah, I don't like swimsuits.

I used to dance a little when I was younger. Now I can't. I can't even do the foot-to-knee-slide down without falling over test with my left leg.

When I did it the first time, I nearly fell with the left, and unsteady with the right.
The second run, I did fall with the left (or was caught, anyway), and perfect with the right. I even started to extend my leg out and point my toes to show off and I was about to wink when I caught myself falling.

Oops.

That was several days ago at the hospital. Now I'm lucky to not crawl and drag half my body some parts of the day...

20 August 2006. 4:14 AM.

Maybe this can be an on-going thing until we know more. But it should help with others trying to figure out what is wrong...

FOLLOW UP:

It is my understanding that they didn't do a full neuro workup an slyly misdiagnosed me as bipolar and...some personality disorder that borderlines with narcisissm (http://en.wikipedia.org/wiki/Histrionic_personality_disorder)

AKA didn't believe me, even when I was told by a neuro I had "abnormal reflexes".

Lovely.

ATM I'm on my own and typing with my right hand.

(They took away seizure disorder and then said "maybe" then gave me LAMICTAL in the event I'm bipolar and attention hungry - complete opposite of my personality.)

:(

I'm off for an interview for a job I can't really be taking as I've been mostly bed ridden with blurry vision and it's 60 mins away but I'm about to lose my health insurance...and my son is 2.5 and fatherelss.

JoyAnn in CO

PS- Hurts to type.