Neuromyelitis Optica - #%^& You NMO!

[Engels]

Sorry for the poor turn of events, Slayerik. Here's my fingers crossed for you and yours.

[01101010]

The world really does need a real life House.

[Lantyssa]

It's okay to vent and yell a bit.  Shit is serious.  Thanks for keeping us updated though.

Is it still only affecting her lower body, or has this relapse affected more?

[Kitsune]

My uncle who had previously been in perfect health, exercised regularly, ate well, suddenly had problems walking.  Then problems moving his head and arms.  Then problems talking and eating.  Now he's almost totally paralyzed and the only thing any doctors have been able to say is that while it's very much like Parkinson's, it's not typical Parkinson's.  They don't know how he got it, don't know what it's doing, and don't know how to treat it.  Our command of medical science is not as great as we like to think it is, sadly.  But at least in your girlfriend's case they've found something clearly out of the ordinary; that's hopefully enough of a lead to point them towards the means to fix it.

[lamaros]

Sorry for the poor turn of events, Slayerik. Here's my fingers crossed for you and yours.

[Slayerik]

It's okay to vent and yell a bit.  Shit is serious.  Thanks for keeping us updated though.

Is it still only affecting her lower body, or has this relapse affected more?

Now she is having sight issues and some issues swallowing, though it's gotten a bit better.

It seems to be a separate, new shitty attack. Her lower body is still paralyzed, Waist up has come back ok...with some limited movement down to her thighs.

[MahrinSkel]

I appreciate ya asking Az...Things were looking well, she recovered a lot of stuff but BAM now she is in bad shape again. Latest MRI shows lesions in spinal cord, brain, brain stem.

It's fucking bleak. Back to steriods, and now going to try an immunoglobin transfer or some shit. They still don't have a real diagnosis. It's crazy. She is trying to stay strong but you work so hard just to get beat back...It's a horrible thing and would never wish it on anyone. She is getting pretty morbid at this point, and honestly how can you blame her? Got all her life insurance and pension stuff sorted. Been a sad couple days. The absolute last thing she needed.

Sorry to be so depressing guys. I'm trying to stay positive but FUCK.

Have they ruled out MS? I only ask because MRI lesions are normally associated with that, but they normally appear over the course of years.  Are these lesions that weren't present on the prior MRI's, and was it the first with contrast or something similar (ie: Is it plausible the lesions just weren't recognized before)?

There are a handful of encephalitic diseases I know of that can present the way you've related (mostly viruses) along with MS, which is probably why they're trying the immunoglobulin transfer treatment.  I'm not a doctor, I just have had cause to look into this kind of thing.

--Dave

[Slayerik]

I'm not sure it was ever truly ruled out, but it didn't seem like it at all from what the doctors have been telling me for a month.

The initial MRI showed extensive lesions, and swelling over 3-4 segments of the spinal cord (termed Longetidinally extensive transverse myelitis) but nothing really resembling MS (more brain focused I think). One iffy spot in the brain. Now it looks much worse, with brain stem and brain activity along with spinal cord.

EDIT: I hate the word lesion. It's a fuckin' nasty sounding word and way nastier when the mother of your children has them in her brain and spinal cord.

[Cyrrex]

Jesus Christ, sorry it isn't good news.  Hang in there.

[Azazel]

Fuck man.
I hope it recedes again. Shit, I don't know what else to say. Fuck.

[HaemishM]

Sorry to hear it, Cheddar. I'll toss some prayers your way.

[Slayerik]

Sorry to hear it, Cheddar. I'll toss some prayers your way.

Cheddarik

[HaemishM]

DUH. That's what I get for looking at goddamn avatars and not names. I don't know why your avatar always makes me think of Cheddar.

[Slayerik]

Well, an update for those interested. She is home, but still not walking. Life has gotten a bit harder, but a bit better as well. I am pretty burnt out taking care of baby twins, and now her, and try to work full time (with hour commute each way), and cook/clean/take babies everywhere. I believe I may be the busiest man in America right now (I even have to wake up with her to help her with cath-ing and stuff).

Family support has been ok, but in the end I feel like the world is on my shoulders. She is working hard and trying to regain strength in her legs (she has decent movement in them now). Everyday life stuff is a challenge. One thing I find both of us saying is "can't ANYTHING be easy?"

My occasional breaks I sneak in some Stone Soup Dungeon Crawl, and watch a bit of TV.

Anyway, back to work! (my easiest stretch of the day).


EDIT: Oh yeah, our Honda died at only 230k miles. New motor needed. WOOOO

[Der Helm]

Best wishes to both of you and a speedy and steady recovery for her.

[Lantyssa]

Glad she is making progress and thanks for the update.  You rock, dude.  Hang in there.

[Jayce]

Man, that is horrible. I thought I was busy helping the wife post partum and trying to work.

If it's any consolation, I feel like a slacker compared to what's on your shoulders. Awesome job and hang in there.

[Engels]

Rock on Slayerik!

[MuffinMan]

Alright, I'm forming an exploratory committee here. Can we pool together and help Slay? Maybe a maid/cooking service for a month?

[Amarr HM]

Best of luck Slay, that sounds like the motherload right there. I hope your wife recovers quickly and things take a turn for the better, try and stay as positive as you can.

[Lantyssa]

Alright, I'm forming an exploratory committee here. Can we pool together and help Slay? Maybe a maid/cooking service for a month?

If he would like the help, yeah, I'd consider it a worthy cause.

[Slayerik]

One thing I have learned from this experience is that if you need help you better ask for it! So yes, anything would be greatly appreciated!

Here is Angie with the babies in the hospital!

[Kitsune]

It definitely sounds worthy enough.  Just have to be careful, Paypal can turn out to be dickbags about setting up donation/non-profit accounts if whatever arbitrary hoops they desire aren't jumped through.

[Cyrrex]

Slayerik's the man.  I'd donate.

[tgr]

I'd chip in for a former ultrapolite socialite.

[JWIV]

Good plan muffinman - I'd easily toss in a few bucks.

[MuffinMan]

Just have to be careful, Paypal can turn out to be dickbags about setting up donation/non-profit accounts if whatever arbitrary hoops they desire aren't jumped through.

Yea PayPal does seem like they need hoops jumped through, not sure if that is worth it just to have lower fees. 

•Evidence of tax-exempt status
•Bank statement or voided check in your organization’s name
•PayPal email account
•Contact information
•Description of your organization and type of payments it wants to accept (such as donations and merchandise payments)

Is PayPal the route to go for this? New thread for more exposure? I'm much more an idea man than an executor.

[JWIV]

My general vote is anti PayPal, simply because they are jackasses, but whatever is easiest to setup.

[Chimpy]

I will toss in something, just come up with the place to send it.

[taolurker]

http://www.gofundme.com/ ?

[Merusk]

Silly techhies, over-thinking a problem.

Slayerik, who do you bank with and what other banks are in your region? Simple enough to set up a fund with any one of them by just talking to the manager.   Just like they do for kids with cancer, killed cops, etc. 

But yes, I imagine he'll have to pay taxes on it if it hits a certain level. After all, he's not a non-profit and this would be income. The Accountants can speak more on that.

Paypal has you jump through hoops to avoid the whole money-laundering thing that would be very abused if they let just anyone set-up tax-exempt accounts.

[Trippy]

Just make an Amazon Wish List. It's a lot easier that way.

[Jayce]

Just make an Amazon Wish List. It's a lot easier that way.

I'm for that. Do they work like a baby or wedding registry? That would make it easy for anyone to go buy something or contribute toward something.

[Trippy]

Yup. He can put whatever items are available on Amazon.com on the list and we buy them and they get sent directly to him. If there's some expensive item that he wants to purchase through Amazon he can put gift cards on the list as well so that purchase can be broken up into smaller pieces.

[Slayerik]

You guys are awesome.

ethanharris@gmail.com

Got some food stuff and gift cards up if anyone would like to help out! Thanks again for the support! 

Make sure to pop me a PM or email if you do donate!