Neuromyelitis Optica - #%^& You NMO!

[Slayerik]

To sum up, my fiancee was paralyzed from the waist down via a Neurologic disorder that caused Transverse myelitis. She is the mother of our 18 month old twins and in total we have 5 children which I now have the lion's share in taking care of.

Thanks so much for helping out.

Amazon email: ethanharris@gmail.com






I know there are plenty of smart folk on these here boards, and I was wondering if anyone has any experience with this syndrome. My girlfriend has been afflicted, and is currently paralyzed from the waist down. Just fucking out of the blue. They are starting her on certain steroids and starting some type of plasma transfusion/replacement or some shit.

Just wondering if anyone has any life experience with this. I have read about all I can find on it, and it seems she should recover fully eventually. Some fucked up shit though.

[01101010]

Only time I have ever even heard of this nightmare was when I had to get my flu shot. Even then, it was
nurse: "Have you ever had Guillain-Barre Syndrome?"
me: umm, what?
nurse: "nope, you'd know what it was if you had it"
me: ok then.

Looks horrible though. Good luck.

[IainC]

Good luck with that. Never heard of this thing before, just read up on it and was horrified.

[veredus]

If I remember correctly from the one pt I saw with it, the plasma thing is basically like blood doping. I think they take out the RBCs from the plasma and put those back in by themselves or something like that. I'm just a Respiratory Therapy student so probably only about half right since not my area of study really. Our pt ended up on a vent (which is why I saw the person) but also ended up recovering fine. Was in the hospital for a long time though. Good luck with everything and make sure to give her lots of emotional support.

[K9]

Wikipedia article for the lazy

I hadn't heard of this either, and it doesn't sound at all nice. My condolences to your girl, I wish her a swift and complete recovery.

[Nebu]

To be honest, the only thing I know is that I had a question about it on an exam in medical school.  I am very sorry that she is going through this and hope that you're able to find an expert in your area. 

[ghost]

Oh fuck, man.  I'm sorry to hear about that.  It usually isn't life threatening (Edit: if you call being on mechanical ventilation "not life threatening"), but it is going to throw a big monkey wrench into both of your lives for a while.  Sometimes the after effects can last for years.  It is likely due to an autimmune response against some foreign antigen-  probably a virus.  Tends to go with viral infections.  I hope she gets better quickly.

[HaemishM]

I've heard of it from House - and if House lists it as a possible diagnosis, you know it's likely fucked up. Other than that, I have no experience. Sorry about your girlfriend, man.

[Selby]

Co-worker's daughter had it a few years ago.  It didn't progress *too* far and she made a complete recovery, I believe she was down for like 3 months and it came on suddenly.  I don't recall her needing to be on a respirator or hospitalization, but then my coworker was tight-lipped about it all when it happened..  Last I heard she was doing very well for a typical teenage girl.  I had a similar episode when I was 12 that resulted in rapid onset paralysis from the waist down as well, the doctors suspected it but since it never progressed beyond that and went away after a week in the hospital on all kinds of drugs, they didn't diagnose it as that.  They believed it was a rare strain of polio, which resulted in a horrendous flu that afflicted my back and had me in pain for 5 days straight after the numbness went away.  I eventually had to learn to walk and write again as my coordination and balance was completely hosed afterwards and as a result I can write with my left hand and throw with it better than my right.

Good luck with this though, it's pretty rough having to deal with it.  The good news is that in all but severe cases she will make a full recovery after some time (which can vary depending on the body's response to it) which while it makes the disease scary, makes it easier to take when you know the chances of recovery are extremely good despite how much it sucks going through it.

[Raph]

My uncle had it, and it knocked him down for a good six months. :(

[Tale]

I think one of the senior producers in a TV newsroom I used to work in had Guillain-Barre. Or at least, before I knew him, he had had a spontaneous lower body paralysis that had put him in a wheelchair, returned to work, and everybody used to ask him about his progress.

I know the broadcaster/musician Lucky Oceans had it. He wrote about it here.

[sinij]

I am sorry to hear about your bad luck.

[Slayerik]

It's not Guillain-Barre, been ruled out. Waiting on some tests to come back, and she is slowly regaining some function. Gonna be a long road no matter what it turns out to be. Now at the University of Michigan and we'll see if they can figure it out. Pretty damn tough as a father of five with 17 month old twins. Fuck it, I'm a rock.

LIKE A ROCK, I WAS STRONG AS I COULD BEEEEE

[Selby]

Waiting on some tests to come back, and she is slowly regaining some function.

This is good news.  And yes, long road indeed.  But regaining function over a shorter period of time is the best you can ask for in such a terrible situation.

[Slayerik]

It's pretty wild, multiple hospitals and some pretty damn good Neurology teams haven't been able to figure it out. Could be something called NMO (scary as fuck too), but her total symptoms don't really ad up to it. My basic hopes are that it is

A. Non-reoccuring
B. Recoverable

It already seems to be recoverable, though it's gonna take some serious PT to walk again, I just know it.

Taking this another direction, it honestly made me believe less in god then I already had. Any god that would do this to a woman who doesn't drink, smoke, and actually is an active and great mom (hell, she is in Karate with all 3 big kids) is a motherfucker and can kiss my ass. Everyone says they are praying for her, and oh god is great and asking god for miracles. You know what? She'll beat this on her own, with a fuckload of work...and it won't be glory to god.


Inside, I am thankful this wasn't a car wreck or something like that we know would be permanent. Trying to stay positive.

[Viin]

Glad to hear she's doing better. Get family to help with the kids!

[Slayerik]

Glad to hear she's doing better. Get family to help with the kids!

Indeed, family helped all weekend with them so i could be with her the whole time.

It's just fucked up, man. So much on my fuckin shoulders now, and for a long time.



MAN UP

[K9]

It's probably due to mould in your walls, have you considered suing your landlord?

[Slayerik]

Where's Nerf when ya need him for legal advice!?!?

[NowhereMan]

Best advice I could give is stay positive, weak as that might sound. Whatever she's got is either recoverable or it's not and if it is she's going to benefit most from someone encouraging her that she just needs to work at it. And remember if you need to bitch about stuff, do it in gen disc and save her the earache 

[Sand]

So much on my fuckin shoulders now, and for a long time.



MAN UP

5 kids and 17 month old twins? Maybe she decided mommy needed a vacation and bingo short term paralysis while dad has to deal with all the crap for awhile? 



In all seriousness hope everything works out for the best. This had to have been scary as hell.

[Cyrrex]

Pretty sure that, given Slayerik's alleged prowess, those five kids are from 5 different mommies.  Including the twins.

Hang in there, dude.

[bhodi]

Pretty sure that, given Slayerik's alleged prowess, those five kids are from 5 different mommies.  Including the twins.

Hang in there, dude.

And, he's not even in the same country anymore.

I kid, I kid.

[Slayerik]

Ok, I got a well needed laugh out of the last 3 posts. And now GBS is ruled out. They actually still haven't fully diagnosed the condition yet. Very similar to a nasty fucker of a syndrome:

Neuromyelitis Optica - http://www.ninds.nih.gov/disorders/neuromyelitis_optica/neuromyelitis_optica.htm

but she has no vision problems.

Luckily, she has a strong spirit and will to beat this. She moved her toes for the first time today. They are taking an aggressive approach to knocking down the inflammation of her spinal cord. We can hope this is a variety that is a single attack, not the re-occuring type.

[Zaljerem]

She moved her toes for the first time today.

That is great news. I'll be stopping in to see her again tonight after work.

[Azazel]

Fuck man. That's shit. I hope it works out for the best and that it's 100% recoverable. There's not much else I can say.

[Ironwood]

This is like an episode of House without the hotness.

[Slayerik]

Na man, my girlfriend is hot ;)

[HaemishM]

Pics or it didn't happen. 

Seriously, though, I hope everything is ok.

[Slayerik]

They are now starting cyclophosphamide tomorrow.  This is a chemo-therapeutic agent.

There were some serious fuck-ups in the whole thing, from a couple of different health systems. The first ER we went to sent her home even with her not being able to walk. Said "she didn't have her primary care physician in their system." Refused to do an MRI. Had they done due diligence with her care, and not just tried to empty an ER room my GF may very well have not have been paralysed. Then at the 2nd system they were at, they did not take her seriously claiming it was a psychological thing. I even saw the note saying that the Dr. was almost certain it was not Neurologic. Were very slow getting an MRI together, put it off an extra day because they didn't have an anes guy available (she was in extreme pain and needed sedation). Everything I have been reading says TIME IS (spinal) CORD. After they saw the results of the MRI, the Neurologist actually came in and apologized saying 'she had everyone fooled'.

Might end up being some Nerf-esque drama in the form of a lawsuit or two.



There's my girl with a kid that is actually NOT ours.

[KallDrexx]

Baby stalker!

[angry.bob]

There were some serious fuck-ups in the whole thing

I hope she's still improving. Not trying to steal your thunder, but shit like that happens a lot. Two years ago I was sick for weeks and finally felt like I was on death's door and called 911. Paramedics came and basically said "Good job wasting our time, you've got the flu you pussy". My wife and I had appointments for our annual dental exams the next day and I went anyway since I love my teeth. My uncle the dentist asked me if I knew I had an abscess. It was a tooth that had had a root canal and a crown so I wasn’t feeling a thing pain-wise, but it had been going on for pretty much the whole year, dissolved a portion of my maxilla, and was dumping puss and blood god knows where inside of me. Two hours in a dental chair for some dental surgery and I was right as rain. Had it not been for the coincidence of that dental exam who knows what would have happened. I could have died from it.
I guess my point is that nobody knows their body better than the person in it. Most people can tell the difference between some minor bullshit ache/pain and when something is really going wrong. If you feel like something is going on, don’t let people brush you off. I know we’re conditioned to not be a pain in the ass, but in cases like these the only person looking out for you is you. Emergency services are the worst way to get that sort of thing sorted out, because they don’t really have the time, plus they have to deal with people pulling bullshit to get pain meds. Once again, some level of treatment between the ER and the two week wait for an appointment with your GP would be super awesome.
Once again, I hope everything works out.

[Slayerik]

She had spent the last month at Neurologists and Urologists and any other ologists that might help her with pain issues.

Thanks, though. She got to spent xmas with our twins and it was tough but really good in the end.

[Azazel]

Any updates? Hoping for good news...

[Slayerik]

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.