Grounded indefinitely

denverpilot said:
... Doc says, “You have something going on in your central nervous system and by the MRI imagery it’s not going to be any disease you’ve ever heard of. It’ll be similar to MS, but not Parkinsons or other common ones you know of.”
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Wow. First, you're in my prayers. Get better.

Second, my wife has had a similar experience for 2-3 years now. She's on full disability as a result. She has the lesions in her brain, but they can't nail it down. One week, she'll have horrible muscle spasms, in her legs, then in her buttocks, then somewhere else. The next week, it'll be something different. She's had the tingling, too.

A lot of people -- more than I ever realized -- have strange neurological stuff going on.

I'm gonna show this to my wife and to our neurologist. (We're going to Emory University in Atlanta.) I'd never heard of your specific condition. Wonder if my wife has something similar, analogous, or at least in parallel to what you're experiencing.

Again: in my prayers, GET BETTER.
 
Damn Nate, sorry to hear this. Sounds like you have a great attitude though. Give it hell!

I did notice a phantom “like” of yours a month or so ago, but I chose not to call you out on it. Please stick around, we miss you.
 
Stephen Poole said:
Wow. First, you're in my prayers. Get better.

Second, my wife has had a similar experience for 2-3 years now. She's on full disability as a result. She has the lesions in her brain, but they can't nail it down. One week, she'll have horrible muscle spasms, in her legs, then in her buttocks, then somewhere else. The next week, it'll be something different. She's had the tingling, too.

A lot of people -- more than I ever realized -- have strange neurological stuff going on.

I'm gonna show this to my wife and to our neurologist. (We're going to Emory University in Atlanta.) I'd never heard of your specific condition. Wonder if my wife has something similar, analogous, or at least in parallel to what you're experiencing.

Again: in my prayers, GET BETTER.
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Just for info, brain lesions usually go against an MRO diagnosis unless they’re closer to or in the brain stem. Usually brain is MS from my reading but the amazing part is like you said. how many people and also how many lesions that don’t look like the known types.

However any optic nerve involvement usually nails it down to NMO.

It’s a tad crazy. I read one of the differential diagnosis flow charts for the various known neurological things that touch the spinal cord and the thing was two large landscape pages printed side by side and step five down the page you’d already mostly eliminated forty or fifty possibilities. Wow.
 
denverpilot said:
Just for info, brain lesions usually go against an MRO diagnosis unless they’re closer to or in the brain stem. Usually brain is MS from my reading but the amazing part is like you said ... However any optic nerve involvement usually nails it down to NMO.
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She is visually impaired. Back in 1999, she was hit with a rare condition called Pseudotumor Cerebri -- acts like a tumor, but it's a buildup of fluid on the brain. Prior to that, she had a history of epilepsy.

Most of the lesion activity is in the brain itself. We're seeing one of the best neurologists in the country now (a member of the MS Society and all that), so we're hopeful.

Take care of yourself, sir.
 
Nate, I already knew about this (and have been trying to interject humor in my comments) from your Facebook posts, but I do hope that the treatments are successful and you keep on ticking. Welcome back.

It's crazy how many diseases there are that can take you from being a normal, healthy individual to not having much clue what the next days hold in no time flat. When I was a kid I had a lot of old people around me living mostly independently and seemingly pretty healthy, so I considered 80+ healthy to be a normal thing. Now even with my mother at 75 (and doing fine) and my father at over 90 (and doing better than my mother) I definitely have questions. These rare diseases are the scariest onces since nobody's heard of them and therefore it's not what anyone looks for because nobody expects it - kinda like a turbine engine failing. :)

Hang in there, keep positive.
 
I wish you the best. Dr Bruce was helpful and wickedly insightful for an MS situation I had back in 2005. I haven’t had an mri since 2015 but there had been no changes in that 10-year period.

I wish you the best. There is a lot of research in this space and it sounds like you have some great docs working with you. Glider requires no medical and scratches the itch.

Best to you.
 
Sorry to hear that. Prayers and good thoughts to you on a successful recovery.
 
Missed you Nate. Your attitude in this is certainly something that should inspire anyone facing just about anything. Best wishes and blue skies in the future.

Cheers
 
Geese Nate, your Mrs. is a mutant and now you're in the clutches of modern medicine. Ouch!

Of course, I now have a new curse to fling at the deserving: "may you suffer a nasty disease no one has ever heard of".

Steingar, the man who had to rush his Mrs. to the hospital because a neurologist looked at her MRI and thought she was paralyzed.
 
Nate,

You certainly are in my prayers. And I appreciate the admonition to get things done while you can.

I don't follow you anywhere else and appreciate you letting POA know.

Anything I can do (like ask inane IR questions to distract you) I'm more than happy to do.

John
 
Sorry to hear this, Nate, but glad you are still with us and getting good care.

I've definitely heard of NMO, having been through a series of neurological tests myself, mostly to rule out MS - not 100% ruled out, but down into the "extremely unlikely" category now. Hopefully it will turn out that you don't have either, and instead a postviral TM or something similarly benign, and one-off. In any case, my thoughts and prayers are with you.
 
azure said:
I've definitely heard of NMO, having been through a series of neurological tests myself, mostly to rule out MS - not 100% ruled out, but down into the "extremely unlikely" category now. Hopefully it will turn out that you don't have either, and instead a postviral TM or something similarly benign, and one-off. In any case, my thoughts and prayers are with you.
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It's encouraging how much better MS treatment seems to have gotten over the past few decades. When I was a kid I had an extended relative who had MS. She was at least mostly paralyzed, in a wheelchair. Whenever we were in town we'd visit her in the nursing facility. I think she passed away when I was around 10 or 15, I forget now, but in those days it seemed like it mostly was just a death sentence, not unlike prostate cancer was for my grandfather when it killed him in the mid 80s.

Modern medicine is truly remarkable.
 
Ted DuPuis said:
It's encouraging how much better MS treatment seems to have gotten over the past few decades. When I was a kid I had an extended relative who had MS. She was at least mostly paralyzed, in a wheelchair. Whenever we were in town we'd visit her in the nursing facility. I think she passed away when I was around 10 or 15, I forget now, but in those days it seemed like it mostly was just a death sentence, not unlike prostate cancer was for my grandfather when it killed him in the mid 80s.

Modern medicine is truly remarkable.
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The other thing about MS is how broad the spectrum of disease severity is. My neurologist says that much of it is subclinical - discovered only on autopsy. When I was younger the most famous case was that of Jacqueline Du Pre, a very well-known cellist whose career was cut short by it - and who eventually died from complications. And I knew a youngish student at my former employer who was diagnosed with it after a bout of optic neuritis - one of the most common presentations - and was disabled and using crutches within months. On the other end of the spectrum, the wife of a family friend was diagnosed with it but had no visible symptoms from it. So there is a huge range of severity, as well as a large number of very similar diseases that can mimic it.
 
Wow... thanks for sharing Nate. Sorry to read of the news. Stay positive and hopefully the current course of treatment brings comfort from the sensations and a cure is around the corner.
 
azure said:
The other thing about MS is how broad the spectrum of disease severity is. My neurologist says that much of it is subclinical - discovered only on autopsy. When I was younger the most famous case was that of Jacqueline Du Pre, a very well-known cellist whose career was cut short by it - and who eventually died from complications. And I knew a youngish student at my former employer who was diagnosed with it after a bout of optic neuritis - one of the most common presentations - and was disabled and using crutches within months. On the other end of the spectrum, the wife of a family friend was diagnosed with it but had no visible symptoms from it. So there is a huge range of severity, as well as a large number of very similar diseases that can mimic it.
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That makes sense. Obviously this relative had a pretty severe case to have been wheelchair bound and essentially unable to talk or communicate.

I suppose same for cancer too. A few months ago I lost one of my best friends from high school to a pretty aggressive form of sarcoma. However, he was a genetic train wreck and had been unhealthy his whole life. He was the true 6 million dollar man... actually probably well above 10 million when you look at the total cost of his health care. But now he is pain-free for eternity.
 
Ted DuPuis said:
That makes sense. Obviously this relative had a pretty severe case to have been wheelchair bound and essentially unable to talk or communicate.

I suppose same for cancer too. A few months ago I lost one of my best friends from high school to a pretty aggressive form of sarcoma. However, he was a genetic train wreck and had been unhealthy his whole life. He was the true 6 million dollar man... actually probably well above 10 million when you look at the total cost of his health care. But now he is pain-free for eternity.
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Sorry to hear that Ted. Yes, modern medicine can work some miracles... but there are still things it can't do, and the Grim Reaper gets us all in the end. RIP.
 
azure said:
Sorry to hear that Ted. Yes, modern medicine can work some miracles... but there are still things it can't do, and the Grim Reaper gets us all in the end. RIP.
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None of us are getting out of this alive, that's for sure.
 
Nate, man, if anyone can figure out what’s going on, it’s you. Your dogged determination will get you through this, whatever that may be. And whatever it is, I’m blaming it on Rocky Flats and ham radio waves. Hang in there and know that we’re all thinking of you. Your recommendation to do the things one says they’ll do is solid. There isn’t a month on a calendar that shows up as “some day.” You have to choose your own and let it rip. You’ve torn it up a few times already; you’ll be tearing it up again soon.
 
Sorry to hear all of this, but its sounds like you are a real fighter. The one thing I took away, well one of the things, is to not wait. Do the things you want asap, tomorrow is not guaranteed. Thank you for that.
 
Lachlan said:
Nate, man, if anyone can figure out what’s going on, it’s you. Your dogged determination will get you through this, whatever that may be. And whatever it is, I’m blaming it on Rocky Flats and ham radio waves. Hang in there and know that we’re all thinking of you. Your recommendation to do the things one says they’ll do is solid. There isn’t a month on a calendar that shows up as “some day.” You have to choose your own and let it rip. You’ve torn it up a few times already; you’ll be tearing it up again soon.
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Rocky Flats, maybe. Ham radio waves? No way. :p

73

N6TPT
 
Ghery said:
Rocky Flats, maybe. Ham radio waves? No way. :p

73

N6TPT
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Well I did play more with microwaves than HF... hahaha. Never stood in front of the 10 GHz dish though, that power level made me nervous. :)

As far as “visible symptoms”, I’m walk-in’ a little funny due to the numbness above and below the knees. Mostly because it “feels weird” not because the muscles don’t respond. It’s more like a “distraction” when walking than anything.

Currently playing a little early hooky from work to hear wifey sing the anthem at the Rockies second game of the doubleheader. They apparently lost badly to the Giants in the earlier makeup game. Ouch.

I’ve noticed like a lot of folks with neuropathy I’m tending toward wearing long pants and solid shoes even when it’s hot out in case I whack my leg on something or foot and don’t feel it. A little cloth or good shoes goes a long way to not having an odd injury you can’t remember getting. Ha.

Makes going to the game in sunshine a little toasty, so I’ll enjoy the afternoon overcast and breeze today. :)
 
denverpilot said:
I’ve noticed like a lot of folks with neuropathy I’m tending toward wearing long pants and solid shoes even when it’s hot out in case I whack my leg on something or foot and don’t feel it. A little cloth or good shoes goes a long way to not having an odd injury you can’t remember getting. Ha.
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Or wearing steel toes in the garage so you don’t have issues when you drop a rear axle on your toe like I did. ;)
 
Hey Nate, I admire your attitude greatly! Auto Immune diseases are frustrating as hell. Seems a fix should be as simple as finding the reduce throttle control for the immune system but easier said than done. I’m convinced one day they will find a cure for auto immune diseases. Keep up the good fight and we’ll keep pulling for you!
 
Nate,

Sorry to hear of these health challenges. You are way ahead of the curve by being an advocate for yourself and making sure that you are seeing the right doctors. Of course I would expect nothing less!
 
dell30rb said:
Nate,

Sorry to hear of these health challenges. You are way ahead of the curve by being an advocate for yourself and making sure that you are seeing the right doctors. Of course I would expect nothing less!
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I’m still very much considering a third opinion at the Mayo, but it would require some insurance juggling and me making it back to working full time, and then of course waiting on a patient ID number there or playing games to get in their system.

Right now I got a bit lucky — neurologists are damn hard to schedule in Denver right now for whatever reason. When it was just a simple set of tests to make sure it wasn’t peripheral neuropathy, I was trying to get into a massive group clinic called Blue Sky here in town that my insurance likes. They were booked over a month out on new patients so I just started calling around.

Dumb luck I ended up at a small six doc clinic who started their own practice because they’re all mainly diagnostic investigators. They treat patients after they’ve figured it out, but they all have impressive backgrounds and their neuromuscular specialist happened to have an opening in two weeks at that time.

Then when the nasty MRI came back, he did the initial “this isn’t neuromuscular” visit and referred me straight across to the other spinal and autoimmune doc in the same practice who started one of the suburban MS clinics at a local hospital before joining this smaller practice.

So, somewhat of a completely dumb luck story to have her as my primary neurologist, but I’ll take lucky over good when everyone in town is booked more than a month out. All I was trying to do was get that darn EMT/NCS done! Ha.

As Doc Bruce joked with me when I voiced some frustration at scheduling specialists, “some things are just broken” right now in medicine.

Anyway, got lucky but also have two solid neurologists who agree so I don’t feel like I need the third opinion from a mega-place like Mayo, yet. But they created one of the blood tests I had. Says a lot about them and Cleveland.

Apparently John’s Hopkins has a research group for transverse myelitis that’s Sierra Hotel also, taking to some folks in support groups, but that one is an “apply and wait and see if they contact you” type of thing. They’re looking for specific patients and conditions.

There’s also supposedly a local doc at University of Colorado who’s known for his work on this. CU is a hot spot for MS specialists, considering our weird higher rates of it here in CO than the rest of the country. So there’s some brilliant folks at University Hospital or attached to it, also.

So yeah, always watching for the “best” out there but also understanding I kinda hit the jackpot by accident in getting the diagnosticians I got. Super nice people too, but man they’re all busy. Their assistants really hold down the fort for all of them. I learned the hard way talking to the assistants (during the panic about the steroid side effects) directly instead of saying you want to talk to the doc, works MUCH better.

Their assistants have Been There, Done That and seen it all, and dh just walk down the hall and in two words between other patients, have an approval for a prescription or the doc will say “get him in here.” Smart smart folks.

I also had a bit of an epiphany on a later visit. I realized the majority of people in the waiting room were on canes, walkers, or in wheelchairs and it dawned on me — I’m ambulatory. I’m truly at the bottom of the priority list in a neuro office. It’s like waking into an ER with sniffles. Ha. But it also means that their assistants who are nurses or PAs, can truly handle my “boring” problems. And do.

They’re the ones who spend hours on the phone fighting with insurance companies for folks with rare diseases and disorders. Truly saints dealing with that crap. The docs are busy being docs and they’ll grab one to tell off the occasional idiot at an insurance company after sitting on hold for an hour.

I could tell there was a fight coming on the infusions when the doc handed me a form and said “Sign this, it allows us to start arguing with your insurance company. And no, it’s not just your insurance company, we just have everyone sign it.” .Wow.

I, of course, joked as I signed it that my right hand is so bad it doesn’t look like my signature anyway, so I’ll just deny it if they just had me sign over my dogs or the airplane or something. Hahahaha. :)

Also reading the support groups has given me a new sense of how lucky I’ve been so far. So many are paralyzed by this stuff. I did laugh that one group has a tradition of celebrating people’s diagnosis dates. They’ll say that they were diagnosed five years ago today, and everyone in the comments will yell, “Happy crapiversary!” Hahahaha.

Awesome people fighting worse symptoms than I am, so far. Fighters. Not very many complainers. The group also likes the “just keep swimming” theme from the Disney movie about the fish. Folks post when they’re having a bad day and the group responds quite often with that one.

Best so far though was the dude who welcomed me with a Dr. Evil GIF. Haha. I already like that guy. :)

Or folks who say stuff like, “Sorry this is the way we meet, but welcome!” Ha.

The Internet has apparently really changed how folks with diseases and disorders communicate and how support groups are created and maintained. ALMOST made me feel better about where the Internet has gone since the early days before mass commercialization.
 
denverpilot said:
There’s also supposedly a local doc at University of Colorado who’s known for his work on this. CU is a hot spot for MS specialists, considering our weird higher rates of it here in CO than the rest of the country. So there’s some brilliant folks at University Hospital or attached to it, also.
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My daughter-in-law is a nurse in Neuro ICU at CU ... I'll ask her about the docs in the group out there if you would like.

denverpilot said:
The Internet has apparently really changed how folks with diseases and disorders communicate and how support groups are created and maintained. ALMOST made me feel better about where the Internet has gone since the early days before mass commercialization.
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My wife was on Lyrica for a number of years for nerve pain and facial spasms after stereotactic radiation on an acoustic neuroma damaged nerves. The Lyrica side-effects began to significantly overwhelm the benefits. She found an online support group for Lyrica users and was able to successfully get off that drug and manage the process with their help. What a nasty, nasty drug.
 
You got what you got Nate. You've been dealt a crap hand. Sounds like your playing it fairly well. Yeah could've been worse.
 
gkainz said:
My daughter-in-law is a nurse in Neuro ICU at CU ... I'll ask her about the docs in the group out there if you would like.



My wife was on Lyrica for a number of years for nerve pain and facial spasms after stereotactic radiation on an acoustic neuroma damaged nerves. The Lyrica side-effects began to significantly overwhelm the benefits. She found an online support group for Lyrica users and was able to successfully get off that drug and manage the process with their help. What a nasty, nasty drug.
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Never hurts to have more names. Really quite a few names already but NMO is so rare that even some neuros shy away from it. Well that and it’s hard for them to get “excellent” ratings from insurers when it kills off many of their patients. Hahaha.

(Dark humor, but I do get a chuckle out of some of the docs on the insurer’s “highly recommended” list, which basically means they don’t spend any of the insurance company’s money. You’re cheaper dead than alive with a long term diagnosis...)

Haven’t seen anybody in any of the groups even mention Lyrica.

Everybody has some side effects with something though, and many of them have withdrawal symptoms that aren’t fun, so when docs want you to “try a few” you end up with being weaned off of the ones that don’t work out and it takes bloody forever.

Meanwhile you feel like crap AND the nerve pain is still there, apparently. LOL.

Drugs... why I’ve always tried to avoid them... ugh.
 
Damn man, sorry for what you are going through. Glad to see you posting here again though! Was a nice surprise every now and then to see a "like" from yours pop up. The health gods are not always fair to us.. hang in there and don't forget about your PoA family!!
 
I can definably sympathize. Honestly, I though I would be dead by 25. I wasn't too far off timing wise but survived. That episode changed my life forever in mostly good ways.

You really never know WTF is going to happen. I know a gorgeous 28 ish woman that almost died from West Nile. She seems to be doing pretty well and now is suffering acute respiratory syndrome, to the point they thought she was gonna die from it.

In my case, grew up with a bleeding disorder, every picture of my from my childhood I'm pretty much covered with bruises. The treatments I was on in later adolescent years was either gong to kill me or I as going to bleed to death, so I thought. 10 yeas ago the bleeding thing disappeared.

There is a lot of luck involved in life, nothing will ever change that. Reference all the cases of necrotizing fasciitis, healthy teen get a scratch at the lake and almost die.
 
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So sorry to hear about your ordeal. Wishing you all the best for the upcoming diagnostics and treatment.
 
Sorry to hear this. It sounds like you have good insurance, which is great. Hopefully it turns around for you.
 
Welcome back Nate! I am glad to see you posting again. Sucky situation you have there but you have an awesome attitude about it. You will get through this!
 
Multiple people asked me privately for an update.

First it should be mentioned that info worthy of updates at this point literally might be measured in years. And maybe that brings a few tears for myself and others. I dunno. But it is what it is.

Right now I have had a number of calls from “case managers” who appear to be paid to sit at home and figure out how to get me on the doc’s requested drug.

And I didn’t know the doc switched from rituximab to the MUCH more expensive but maybe slightly better Ocrevus but I found out by a four color spiral bound “pretty” document showing up at my door by two day air mail, “welcoming” me from Genentech.

We have a print shop. I know that **** was expensive. So I googled. And found the controversy of this drug being brought out by a maker who’s patent is about to expire on rituximab — and guess which one got FDA approved first for MS/MS cousins? LOL.

Also read that a doc said he’s seen the paperwork on his wife’s infusions and this chit ends up (after much negotiation) costing his insurance company $150,000 a dose. And I’d have two in fifteen days to start this infusion “fun” and then one every six months.

I think everyone on the stuff is automatically required to be in the studies at CU that are comparing efficacy between rituximab and this drug over LONG time frames, so it wouldn’t surprise me at all that my CU trained and very good doc is involved in “pushing” this drug to anyone who’s insurance will handle it. And yes, early numbers show better long term results for patients, especially younger ones, so I’m NOT going to complain.

Also had an interesting conversation with the “specialty” side of CVS, the pharmacy assigned to manage this stuff for my medical company. They asked me to call so I did and I reached a specialist who when I said my case wasn’t technically MS yet, but was Transverse Myelitis — I swear she almost came out of her chair on the other end of the phone.

You see, her mom was diagnosed with it 25 years ago AND mistreated for it for a few years until she found a doc that knew MS and MS’ cousins. And knew TM. Because of that, her mom went from paralyzed to walking. But she never fully recovered. And that’s common of the stories 20+ years ago.

Today the support groups talk about it as “thirds”. 1/3 recovers fully. 1/3 recovers partially. And 1/3 doesn’t recover at all.

Which doesn’t take into account how bad it was to you on initial attack. After meeting and talking to other TM patients I feel damned lucky. Most get their diagnosis from waking up one morning paralyzed — some paraplegic, some quadriplegic. It’s nasty nasty chit.

So... still waiting on infusions. I had to educate the “case manager” that my particular insurance doesn’t give a rat’s butt who you see, but because it’s owner is HealthOne/HCA, the only pet peeve they have is that all procedures be done in one of their buildings. Clearly that’s the cheapest for them. ANY attempt to do this in my neuro’s office will be flatly denied, or they’ll tell me to pay for 20% of it up to annual maximums.

The drug, they get to argue that with CVS/Healthmark. They’re the only provider allowed unless you’re laying in an ER. So that’s probably good for my wife’s company and bad for delays.

Currently all ramped up on a low dose of Gabapentin and it’s kinda working. 300 mg three times a day. I suspect from lots of reading and how the hands feel, it’ll have to go up to 600 mg, at least in afternoons and evenings.

I “gave up” today and had to toss one Tramodol on top of it. 50 mg. That’s enough to keep me from wanting to yell about the hands today. I’ll be letting the neuro office know.

Also found an online “friend” via one of the online groups who’s a dude who’s been diagnosed for 11 years. He says hi to all the new folks in the group privately and checks to see if we have any questions. Been sharing the little oddball symptom changes with him and his sage advice...

“Ahh, little brother. You have all sorts of new things still coming. You’re way too early in this to know where it’s going to go.”

He’s also (like @bbchien) counseled me to settle in for a couple of years and see what happens. (Thanks Doc!) The first couple years are critical to where the long term story goes. And most of us living in this “instant gratification” society are a tad impatient when someone says, “Wait two years.”

So that’s today’s update. Really nothing. Until these folks figure out if I’m taking the drug that costs more than my first real estate purchase for one dose, or not... and which infusion center will he sticking a needle in my arm.

Here’s fun for ya. The infusion tends to cause anaphylactic problems in a small set of patients if pushed too fast. Body reacts to it. Most common side effect is itching constantly for 2.5 hours. Yay. But the worst responses require stopping and jamming drugs into you to stop the body freaking out. Oh... and they stuff you with 100mg of IV prednisone AND 50 mg of IV Benadryl BEFORE you start just to make sure.

It’ll be a lovely day. The first two infusions are half dose of the expensive stuff just to see if you react or not. After that the six month version is full whack.

First two take a minimum of 2.5 hours. Usually longer. Reaction, push that out to six.

Six month ones, minimum 3.5 hours.

And for both, an hour without removing the IV line afterward in case your body decides to have a hissy fit this time.

I’ll bring a book.
 
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Oh I forgot. Another awesome, for me anyway, statistic. If Neuromyelitis Optica is ruled out, and technically it’s not for me BUT I don’t have the antibodies. (40% of active NMO cases don’t, though...)

For SOME unknown reason, patients with longitudinally extensive transverse myelitis, which just means that the lesion is longer than 3 vertebrae — and mine stretches out over *seven* which is quite rare — only see a 5% chance of relapse. Which is absolutely an order of magnitude lower than all other TM patients.

The downside of LETM is that it is a LOT of nerve tissue affected in the spinal cord. It really does take two years to see if it can recover.

Meanwhile I need to get my ass back to a good PT and keep the muscles and tendons loose and fight any “spasticity” like hell. Exercise and stretching and pain to keep it all moving. Forces the body to consider reconnecting whatever nerves it can, however it can.

It’s a “sit on your ass it’ll get worse” disorder. And “don’t use the bad hand use the good one” doesn’t help you any either. Just force yourself on good days to lift that coffee cup with the hand that hurts, or watch it atrophy and die. Your choice!

So eff this disorder. I’m fighting until I have to take another damn nap. Ha. It wears you out quickly. If it’s years of kick ass, and then nap, and then kick ass some more, then that’s the new me.

I’ll let y’all know how it’s going from time to time. The infusion story could be more “entertaining” than I want it to be. Hope not! Ha.
 
Well, Nate, "like" isn't appropriate for this one. Since Xenforo is still living in the Facebook2005 land of only being able to hit "like", I'll say I appreciate the update, and sorry that this is going to take so long to find out what you can even do about it, if anything. Keep up the fight.
 
Oh, and I'll also say, don't let things atrophy. My uncle was having a lot of back pain, ultimately did back surgery. He never did his part on PT and so he's been wheelchair bound for essentially the past decade, and bitching about it. I want to tell him "Well you should've gotten off your lazy ass and actually done what the PT folks said to do."
 
I've been on Rituxan before probably 8 infusions total, the infusions took many hours, thank god the IV Benadryl always helped me sleep through it.

Only once did I ever get a little itchy.
 
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