Interesting Unusual Atypical

[Guest guest]

DANG am I getting sick of those three words! They seem to come out

of every doctor's mouth I encounter. If they don't figure this out

soon, I may just have to donate my body to science now and get it

over with. If I was a horse, they'd be taking me behind the

woodshed and calling the renderer, let me tell you.

I'm getting a little tired of the sympathetic nods, the shaking

heads and clucking tongues, too. I don't want pity, I want a damn

diagnosis, and I want treatment. Sorry about the language,

but...but...damn!

Yesterday I had a seizure while I was sitting in the the room

waiting for my rheumatologist. He came in at the very end (I was

there for probably 45 minutes, and the headache that preceded it

began when I went for my blood pressure, weight, etc. So, this

seizure lasted about 45 minutes (better than the 2-3 hours the first

one lasted). I was still pretty out of it when the doctor finally

came in. I told him I had just had a seizure, and he patted me on

the back, asked if I was ok, and then proceeded to tell me the " good

news " ...that essentially there was nothing wrong with me! EXCUSE

ME? He said no lupus (my ANA titer was " too low " and " wrong

pattern " which I know is bull, since I've spoken to a few people on

the lupus board who have the same pattern at the same titer or

close), my RF wasn't high enough, and my sed rate wasn't high

enough. My dsDNA was coming back positive but well within the

normal range. OK. I try to explain to him that I have been on

Plaquenil for 5 months, now, and that before I began it my RF was

well over 100, and getting higher each test, my LOWEST sed rate was

somewhere around 56, and often was quite a bit higher, and my dsDNA

was elevated (borderline high). I asked if the plaquenil can lower

these rates. He refused to answer, pointing again to the current

lab work. I figured I may not be making myself clear (the seizures

affect my thinking and speech for quite some time), and so tried a

different approach, also hoping it wasn't so confrontational, and

that maybe it would get me some answers if this ISN'T what everyone

ELSE thinks it may be. I ask if it isn't lupus, what could it be.

He tells me it could very well be a viral infection. I tell him my

spinal tap was clear...no sign of infection at all. He said that

maybe they only checked for a bacterial infection (I know she

checked for everything). I then ask how it could last for 2

freakin' years. He then says, " Well, this all started just a couple

of months ago, right? " ARRRRRGGGGGHHHHH!. NO. It started after my

daughter was born. He then says that the kidney failure has nothing

to do with my current neurological problems. YES. I KNOW that.

But that is when the fatigue and joint pain started...first mild,

and has progressively got worse. And, yes, the neuro. problems

started in the last month, and the yeast infections/thrush began a

few weeks before that, and the hair loss a few weeks before that.

HOWEVER, the original complaints, combined with some other problems

(hearing loss, vision problems, etc.) have been going on for a long

time, some as long as 2 years. So, he drew even MORE blood (I

offered to just let them bleed me out completely, and then they can

keep it in a fridge and take out what they need when they feel like

it...I wonder if they are DRINKING the stuff ), had me pee in a

cup, gave me $400 worth of vitamins and supplements (!), and told me

to come back in 3 weeks.

I am SO getting tired of all this. I try to keep a sense of humor

about this, but this is getting ridiculous. I have more doctors now

than I knew existed, and no one knows what is going on. I'm not

allowed to drive, I'm not allowed to work, my mom and husband hate

each other (to their credit they have been getting along

surprisingly well this past week), my mother in law whines that she

has to come and help once in awhile to give my mom a break, I can't

even go out to pet my horses because I become violently ill if I'm

in full sun for more than a few minutes, and going out to the store

wipes me out completely. I'm on meds to prevent seizures (for what

good that does), bring down my CSF pressure, slow my heartrate

(which went sky high this last seizure and wouldn't come down even

with the beta blockers for about 15 hours), plus the plaquenil. At

least I'm off the prednisone, but when I stopped that, the rest of

my hair fell out and the joint pain came back. Oh, the joys of

being me.

And yes, I admit I cried last night. The seizures also affect my

mood, and I finally just lost it last night. Of course, my husband

waking me up to complain about our financial situation didn't help,

but I probably needed it, anyway. And today I'm just cranky as all

get-out. Oh well...my family will have to deal, and I'll get over

it. I just needed to vent to some people who'd understand, and who

I didn't need to speak to. My new " trick " is to start shaking

uncontrollably when I try to speak any louder than a whisper. I'm

SO much fun to be around.