By BadDoggie (Fri Nov 04, 2011 at 02:55:44 PM EST) it's not lupus (all tags)
After almost three full weeks as an in-patient I'm finally home in the new home I haven't spent a full week in yet. The cause has been found and while eminently treatable, is a rare form which is much less likely to fuck off and go into remission.

I'm finally home with my girls. Thanks for all your good wishes. Answers to questions in SS' diary below. Also a poll.

I don't watch House because once you've seen one episode you've seen them all. This site is excellent.

Every single doc I know loves and hates that show, and to a man or woman, they all watch it religiously. They hate it mainly because of the stupid it puts into laymen's hands. I made a "maybe it's lupus" joke in week two; I spent a lot more time explaining my medical bonafides didn't come from a TV show and that I was on their side.

So what is it?
I am the owner of a rare form of myasthenia which has my immune system fighting the MuSK protein which is a necessary neurotransmitter to get the messages from the nerves to actually fire the muscles. Which is why I'm also very weak overall -- the muscles which require the finest and most coordinated control are the first ones to show problems, so eyes, then swallowing, then... well... apparently the next thing to get really problematic is breathing, though the swallowing problems and inability to really cough already put you at high risk of choking.

Etude of Irony, in three parts

  1. SS had been teasing me last year about weight gain from drinking 2 or 3 nightly bottles of Beck's Blue (0% alcohol and tastes like beer). Now as I try to claw myself up from an unintended anorexic 60kg, she's quite happy that one visitor brought me a 6-pack.
  2. They tested me for HIV in the first week which had SS a bit nervous. Though I haven't done anything even remotely risky, I did receive 4 units of blood two years ago. Only hours later they started focusing on myasthenia, a problem with an overzealous immune system.
  3. I survived my pancreatitis ordeal and fatty liver with all organs intact and functioning at full power. No transplant or even drugs necessary. For myasthenia treatment I'm looking at mestanone, cortisone, calcium supplements, and a course of immunosupressive drugs that my transplant recipient friends here are rather familiar with. Beats choking to death on your own saliva... probably.
Comments ib my wife's diary

Attention TPD infidel: Multiple MRIs, full sequences up to an hour long. Loud as fuck, and with that goddamned head cage. Not in a tunnel but rather 2" under the giant white 7' diameter spaceship disc of WHATDAFUCK IS WITH THE NOISE?!

Attention merekat infidel: I was on double-plus super-secret bestest behaviour for which I was rewarded by better care in the ward. I went to this hospital because as SS wrote, I had been there a couple of months ago at the direction of my neurologist to be treated by certain specified doctors, all chiefs of medicice, including the head of the neurology dep't. The more convenient hospital isn't that much more convenient, almost killed me a couple of times, and is generally complete shit. It ain't me vs. the "Establishment" so much as it is me vs. people who don't know what they're doing.

Attention atreides infidel: The symptomology and test results were all at odds with each other. They ruled out myasthenia back in July -- including this form -- and kept searching for ever-weirder shit. And to rule this form out they had checked for MuSK antibodies, done a thoracic CT and a spinal tap as well. Nada. §§§

Attention muchagecko infidel: I am indeed too cantankerous to succumb, but I was starting to get a bit nervous when I was no longer able to cough but rather just wheeze a bit. I still can't cough properly but it's all slowly getting better.

Thanks again for your comments and concern. But more than that, thanks for the support you fuckers gave my wife. She really went through a hell of a time here, worse than the pancreatitis because that time they not only knew what the problem was but progress was clear and quick. So thanks.


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I CAN HAZ DYAGNOESISS | 14 comments (14 topical, 0 hidden)
Can we call you Waldo? by georgeha (2.00 / 0) #1 Fri Nov 04, 2011 at 03:04:53 PM EST
Overactive immune systems are being blamed for everything these days, sulfasalazine is my quality of lifesaver.

Welcome home. by ana (4.00 / 2) #2 Fri Nov 04, 2011 at 03:06:15 PM EST
Please do try to stay out of hospitals in future. Not by refusing to go, but by not needing to go. 

I now know what the noise that is usually spelled "lolwhut" sounds like. --Kellnerin

Right then. by clock (4.00 / 3) #3 Fri Nov 04, 2011 at 04:43:00 PM EST
Less of this shit, please. More of the living long and prospering.

I agree with clock entirely --Kellnerin

WIPO by brokkr (4.00 / 1) #4 Fri Nov 04, 2011 at 04:57:31 PM EST
Your desk will finally suffer a catastrophic integrity failure from the repeated blunt force impacts in the general area of the head-shaped dent.
Deyr fé, deyja frændr, deyr sjalfr it sama,
ek veit einn, at aldrei deyr: dómr um dau∂an hvern.

I had to move his desk on moving day. by sugar spun (4.00 / 1) #8 Sat Nov 05, 2011 at 04:24:06 AM EST
It came in multiple sections; two of them were broken and only held together by the pressure from the other bits keeping them in place.

I suspect blunt force trauma.

[ Parent ]
neurological issues = teh suck by Kellnerin (2.00 / 0) #5 Fri Nov 04, 2011 at 07:56:19 PM EST
Well, so are all the others, I suppose, but there's something disconcerting about muscles not doing what you want them to do. Hope that the whole system is well tuned up now and continues to be so.

"Plans aren't check lists, they are loose frameworks for what's going to go wrong." -- technician
Ah yes... by TPD (2.00 / 0) #6 Fri Nov 04, 2011 at 08:51:20 PM EST
  had a head MRI a few years back, (they managedto confirm my brain was all pesent and (in)correct), amusing for the relaxing ability to choose from a wide variety of music to be piped in though riddiculously ineffectual all plastic headphones, at roughly the volume of an ant's sneeze, whilst surrounded by what sounded like an amplified jumbo jet taking off.

why sit, when you can sit and swivel with The Ab-SwivellerTM
good luck etc -nt- by clover kicker (2.00 / 0) #7 Fri Nov 04, 2011 at 09:04:36 PM EST

Good luck and get well! [nt] by TheophileEscargot (2.00 / 0) #9 Sat Nov 05, 2011 at 04:26:06 AM EST

It is unlikely that the good of a snail should reside in its shell: so is it likely that the good of a man should?
Krankenschwestern often go bra-less. by ammoniacal (2.00 / 0) #10 Sat Nov 05, 2011 at 02:30:09 PM EST
'nuff said.

"To this day that was the most bullshit caesar salad I have every experienced..." - triggerfinger

Yay! by motty (2.00 / 0) #11 Sat Nov 05, 2011 at 02:36:12 PM EST
Welcome back. Wishing you better.

I amd itn ecaptiaghle of drinking sthis d dar - Dr T
welcome back by infinitera (4.00 / 1) #12 Sat Nov 05, 2011 at 11:52:14 PM EST
Congrats on a proper root cause!

[…] a professional layabout. Which I aspire to be, but am not yet. — CheeseburgerBrown

I can visualize it at the molecular level by iGrrrl (2.00 / 0) #13 Sun Nov 06, 2011 at 09:22:16 PM EST
Not that it helps or anything, but that kind of stuff was right in my scientific sandbox. I hate it when it moves from lab to actual people.  I hope the treatments do well for you.
"I honestly pity the stupid motherfucker who tries to talk down to iGrrrl" - mrgoat
Sounds awful. by ambrosen (2.00 / 0) #14 Mon Nov 07, 2011 at 06:20:35 AM EST
But immunosuppressants generally do their jobs. I've never had any real problems with azathioprine, but it's worth making sure you have it as part of your nutritious breakfast: it doesn't go too well with empty stomachs and if I screw up and forget to take it in the morning, the first reminder is that I feel super lethargic, then taking it later means I don't sleep in the evening.

Steroids, I'm sure you're familiar with. After a hypomanic episode early in 2010, I hope I'll be able to avoid them in the future.

But yeah, autoimmune diseases are improving all the time in how they're treated, so hopefully it'll get better controlled.

You were all in my thoughts, even if I was crappy at writing it.

I CAN HAZ DYAGNOESISS | 14 comments (14 topical, 0 hidden)