Grounded indefinitely

steingar said:
I wouldn't be at all surprised if this was an effect of improper development due to the Turners. Damn mutants.
Click to expand...

X-Men makes mutants sound a lot more interesting.
 
steingar said:
A whole bunch of superheroes got their powers from lab accidents. I worked in laboratories half my life. No superpowers. No flight, instant healing, X-ray vision, nothing. All I got was a PhD.
Click to expand...

That is a bummer, lol. jk.
 
denverpilot said:
This everybody in the house getting old crap isn’t for wimps. It’s also for the birds right now. Sheesh. :)
Click to expand...

I believe it was my mother-in-law (a retired nurse) who observed that getting older isn't for sissies. Boy was she right.

tspear said:
However, my 102 old grandmother says, "getting old sucks, but still better than dying".
Click to expand...

Your grandmother is absolutely right.

Pilawt said:
I hear there are treatments for that, too.
Click to expand...

Growing up in the house of a college professor I learned that the three degrees are Bulls^&t, More of the Same and Piled Higher and Deeper. Nothing in my engineering career convinced me otherwise. :D
 
Ghery said:
Growing up in the house of a college professor I learned that the three degrees are Bulls^&t, More of the Same and Piled Higher and Deeper. Nothing in my engineering career convinced me otherwise. :D
Click to expand...

lmao. me too. Both parents have PHD. Every cousin and brother has at least a MS. Most of multiple grad degrees. I am the only one with just a BS; but I have plane! They do not. So I win!

Tim
 
By the way for those who might be wondering, Karen has a genetic disorder where some of her cells don’t have a particular chromosome. It’s called Turner’s Syndrome.

Long ago @steingar and I were talking here and when he learned of the condition he was surprised. It’s rare.

And in good years we see @steingar in person at Oshkosh, and when he met Karen he jokingly called her “the mutant who shouldn’t be alive” and then we discussed the details of how that particular mutation usually causes mortality in the womb, etc.

And we always have adult drinks in hand during said missives.

She and I were both in on this mutant joke but I realized that the audience here might not understand it. :)

Much as you might not think so, a PhD who knows genetics can be fun at parties! LOL!
 
denverpilot said:
By the way for those who might be wondering, Karen has a genetic disorder where some of her cells don’t have a particular chromosome. It’s called Turner’s Syndrome.

Long ago @steingar and I were talking here and when he learned of the condition he was surprised. It’s rare.

And in good years we see @steingar in person at Oshkosh, and when he met Karen he jokingly called her “the mutant who shouldn’t be alive” and then we discussed the details of how that particular mutation usually causes mortality in the womb, etc.

And we always have adult drinks in hand during said missives.

She and I were both in on this mutant joke but I realized that the audience here might not understand it. :)

Much as you might not think so, a PhD who knows genetics can be fun at parties! LOL!
Click to expand...

Said I that I did so in error. Turners is usually viable, but they look different. A example:

2-Figure1-1.png


Symptoms include sterility, short stature, and those flaps of skin at the neck, among other things.

What really highlighted my interest is Karen (Mrs. Denver pilot, who is an absolutely adorable lady) exhibits some symptoms, such as short stature and sterility, but not others, like the neck flaps. I can't recall if I deduced or was told that she is in fact a genetic mosaic. All females are genetic mosaics, because of the inactivation of one or the other X chromosomes (there can be only one) females can have different active X chromosomes in different cells.

Karen's case is far more interesting. Turners is often caused by Meiotic nondisjunction, a failure of the cellular division machinery to equally divided the chromosomes. In Karen's case the nondisjunction was mitotic, that is during normal cells divisions, but very early during embryogenesis. As such some of her cells are Turners, lacking one copy of her X chromosome, and some not. You can have extra X chromosomes without issue, the extra are inactivate via the same epigenetic mechanism that inactivates the second X chromosome in females.

There were sufficient Turners cells to give her some phenotypes, like short stature, but not others, like the cognitive dysfunctions. My hope is she hasn't too many Turners cells in the thoracic region so she can skip the aortic ischemia.

This sort of mosaic Turners is actually quite common, and occurs in about half of all Turners patients, at least according to the internet.

The other big sex chromosome abnormality is Kleinfelters, which is XXY. Mrs. Steingar had a doctor named Kleinfelter. I asked his very perky assistant if he was related to THE Kleinfelter, and was told he was indeed. I was pretty chuffed to have a descendent of the Kleinfelter doing medical stuff to my old lady. Turned out the whole thing was bogus. Rats.
 
tspear said:
@steingar

I think I need to go back to school for a translation :D

Tim
Click to expand...
During cell division homologous chromosomes separate and move into the daughter cells in a way that everyone winds up with the correct complement of chromosomes (i.e. the right DNA). Every so often that doesn't happen. Two chromosomes stick together instead of coming apart. The coming apart is called disjunction. If they fail to do so, its nondisjunction. An appropriate metaphor is my buddy who got divorced. When his wife left him it was disjunction. When, at the last hour she said "are you sure you don't want to stay married", it was nondisjunction. When he said "no way in the seven circles of hell", it was back to disjunction.

When a chromosome undergoes nondisjunction, neither of the daughter cells from the division have the correct number of chromosomes. One daughter cell is missing chromosomes, while the other has one too many. If this happens during the meiotic cell division process that makes gametes (sperm in guys and eggs in the ladies) the gametes wind up with the wrong number of chromosomes. If they fertile and egg the embryo will have the wrong number of chromosomes, a condition called aneuploidy. Most such embryos are inviable.

If this happens to a sex chromosome the result is different. An embryo that lacks an X chromosome will have Turners if a female and will be inviable if male (gotta have at least one). One with an extra X chromosome won't suffer any consequences because the extra can be inactivation in a process called dosage compensation.

The early embryonic cells divide in a process called mitosis, where the cells all produce daughters identical to themselves. The consequences of nondisjunction are the same. However, if it happens during this period of development, not all cells will be aneuploid for the X chromosome. Some will only have one, and will give rise to Turners traits in the tissues they make up. The cells with the extra X chromosome will be normal. Some normal and some Turners cells in the same person is a mosaic.
 
tspear said:
@steingar

I think I need to go back to school for a translation :D

Tim
Click to expand...
Does this make more sense? :D



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@steingar

The second attempt was much clearer. The divorce joke was well placed.

@wsuffa

lmao, so very true. I should find some stuff from my federal contracting. I have seen sentences that have articles, and just abbreviations. And what is sad is I understand them...

Tim
 
denverpilot said:
Round two of infusions. Finally saw the actual EOBs and billing. Genentech made $70,000 in two weeks. Whew.





In other news, coban is a really cool material. LOL. Sticky yet not sticky.
Click to expand...
Again, you look artificially happy! LOL
 
I had a conversation yesterday that made me think of @denverpilot and his current situation.

My son's gotten back into horseback riding, so I had him over. These stables are quite the community, always people around and everyone just happy being around horses. Sort of like an airport, but not as many old white guys sitting around talking about "Back in my day..."

Anyway, was talking to one of the women who kept her horse there, and she said she got back into riding in part because of her MS. Basically she used to work out in the gym a lot more, but with MS she can't. She can, however, ride horses. Anyone who's ridden horses knows that it's a workout to do so, and still helps with a lot of core muscles.

I found it very interesting. So Nate, might be something worth trying out if you're interested. Also, you'll then realize you should've kept your Ram and gotten a horse trailer for it. :rofl:
 
Ted DuPuis said:
My son's gotten back into horseback riding, ...
Click to expand...
You son got back into it? I thought he was like 6?

In conversations with horse owners I realized that they have something in common with aircraft. They cost about the same.
The one owner chided me that two airplanes can't make a baby airplane. I shot back that airplanes don't get sick and die.
 
steingar said:
You son got back into it? I thought he was like 6?
Click to expand...

Yes. We first started him when he was 4, just over 2 years ago. I rode with him too so it was father/son time (I love riding but airplanes have taken over my life). He was doing well with it and riding a very old horse who was great with new riders (the personality of the horse is as important, if not moreso, than the capability of the rider), but there were a few issues with the instructor and then the horse he was riding got sick. The other horse they had was named "Coco" and Coco was Loco. I rode that horse fine, but was not at all ok with him on it. So we stopped.

Fast forward and we've found a much better stable with instructors who I think are better. Plus something like 34 horses total there, so if one is sick or otherwise unavailable, no problem - there are others. I need to talk to them about trying to work out something where I can get on a horse if nothing else just to exercise it (and myself) while he's doing lessons.

In conversations with horse owners I realized that they have something in common with aircraft. They cost about the same.
Click to expand...

All people I talk to who own both airplanes and horses have all said the same thing: "Horses are expensive."

I have determined that I would rather rent horses than own.

The one owner chided me that two airplanes can't make a baby airplane. I shot back that airplanes don't get sick and die.
Click to expand...

While you are correct, Michael, with the maintenance bills some of us have seen it can amount to the same thing.
 
Ted DuPuis said:
While you are correct, Michael, with the maintenance bills some of us have seen it can amount to the same thing.
Click to expand...

While that is true, the normal lifespan of a horse is 25-30 years, period (according to the internet, so it has to be true). My airplane is far old than that and will continue to soldier on for the foreseeable future.
 
steingar said:
While that is true, the normal lifespan of a horse is 25-30 years, period (according to the internet, so it has to be true). My airplane is far old than that and will continue to soldier on for the foreseeable future.
Click to expand...

Agreed. I was making an attempt at humor. It failed.

I won't quit my day job.
 
Ted DuPuis said:
I had a conversation yesterday that made me think of @denverpilot and his current situation.
Click to expand...

Appreciate the thought but recall I’m having neurological pain (or mechanical considering the ortho wanted to replace a disc — and then ran away when he saw the second MRI) in the hands as well as atrophy.

They pretty much “burn” from the moment I wake up until I fall asleep at night. Right hand a couple of significant notches higher than the left.

Morning is better. That’s the mechanical part. By afternoon the neck gets compressed. Traction of any sort, self done - bend over at the waist and pull on head.. haha, traction air pillow thing, traction machine, foam roller exercises, whatever... upward on the neck ... will lower the pain in the hand about three points when done in the evening. For a while.

It’s all inflammation related. The only times the hands have felt good in four months or so is when I’m being stuffed full of IV corticosteroids. They knock down whatever is inflamed in the neck and the hands are “almost normal”.

Same thing with the included local anesthetic in the steroid shot to the right side of C5/C6. The local was blissful to the hands, the steroid lasted maybe three days. Was nice to have three days of pain free hand use, let me tell ya!

But... can’t have steroid shots to the neck every three days. Well you could, but you’d end up really sick/dead. LOL.

Hanging on to a horse bridal or reins doesn’t sound fun at all. There’s days when hanging on to a steering wheel hurts more than I want. Depending on which hand I need to use to hang on to doggie leashes when I pick them up from camp or take them to the vet or anything...

Well, I once DID ride horses and I wrap their leashes around the hand in the death inducing style of reins with a naughty horse who might bolt. The wrap style where the horse will just have to drag you. LOL. Just as a safety precaution.

If they see something and take off after it, I don’t have to rely on grip strength to stop them, they’ll just have to drag me.

Hands have not really been trending the right way. It sucks. But what-cha-gonna-do? Probably have to find an ortho who isn’t chicken of spinal cord inflammation. Or neurosurgeon. Or both.

Probably have to start with a follow up visit to the neurologist. Now that the other symptoms are essentially under control and not changing, it really highlighted this bad spot in the left side of the lower neck that feels like an icepick is stuck in it most of the day (appropriately dulled by whatever level of painkillers I’m on) and mechanically manipulating that area of the neck changes the RIGHT hand symptoms significantly.

It’s literally. A pain in the neck. LOL.

I’m guessing the neurologist will then start the referrals to the massive “team” most patients have. We trust this ortho, we trust this gastrointestinal doc, we trust this pain management doc...

I probably just need to get back on it and start these conversations. I’ve been avoiding the upcoming ridiculousness I KNOW has to happen now.

All I’ve wanted to do lately is just go to work, get some crap done, go home, and occasionally go out for a little fun. The evening fun stuff can be a real bear the next day. Very easily run down.

We went out to dinner at a bar for a fundraiser for Karen last night. Worked out well, family was in town unexpectedly so we had them come over. That much extra made today a challenge. Especially right now at 5PM still sitting at the office. Right hand is TICKED.

I think people at work could tell today. You try to hide it and just go about your business but folks kept asking how I was. I suspect what they are seeing is the Frankenstein limp and maybe my facial expression about the neck and associated neck and shoulder muscles as I walk.

Up and down motion, no bueno. Horse bouncing, not a chance. Turbulence? Nope. LOL.

Basically for a few weeks, maybe a little over a month, I’ve been being the stubborn German trying to figure out coping and adapting methods. But the hand thing I’m realizing, still isn’t really under control. Argh.

I’m also REALLY avoiding more drugs. I don’t want the damn things. But we’re at 1200 mg of Gabapentin and still having days when the right hand is a serious problem/distraction at best. Trying to ignore it mostly. Drugs aren’t the answer. I have ZERO desire to be a pharma-zombie.

Anyway. Minor bitching. Sorry. Still not paralyzed and still up and kicking. Life is good. The dinner last night was delicious. Bacon Mac and Cheese with Chicken and fried pickles hahaha. Okay, that probably wasn’t the healthiest thing I’ve eaten lately. But not a nightly thing. Not even a monthly thing really. :)

Plus 10% of the check went to my wife’s chorus. That was cool. :)
 
Bacon Mac and Cheese with Chicken and fried pickles. Ummmm, sounded good til the pickle part. :eek:

What do the docs say about Marijuana? Not at work of course.
 
Ted DuPuis said:
Yes. We first started him when he was 4, just over 2 years ago. I rode with him too so it was father/son time (I love riding but airplanes have taken over my life). He was doing well with it and riding a very old horse who was great with new riders (the personality of the horse is as important, if not moreso, than the capability of the rider), but there were a few issues with the instructor and then the horse he was riding got sick. The other horse they had was named "Coco" and Coco was Loco. I rode that horse fine, but was not at all ok with him on it. So we stopped.

Fast forward and we've found a much better stable with instructors who I think are better. Plus something like 34 horses total there, so if one is sick or otherwise unavailable, no problem - there are others. I need to talk to them about trying to work out something where I can get on a horse if nothing else just to exercise it (and myself) while he's doing lessons.



All people I talk to who own both airplanes and horses have all said the same thing: "Horses are expensive."

I have determined that I would rather rent horses than own.



While you are correct, Michael, with the maintenance bills some of us have seen it can amount to the same thing.
Click to expand...

Well when you start rescuing horses you’re going to need a bigger plane.
 
flhrci said:
Bacon Mac and Cheese with Chicken and fried pickles. Ummmm, sounded good til the pickle part. :eek:

What do the docs say about Marijuana? Not at work of course.
Click to expand...

The fried pickles were on the side. Appetizer. Dipping sauce. You could have avoided them. LOL.

As far as what Docs say about marijuana? Hopefully not that it calms their nerves before surgery. Hahaha.

Oh, you meant for patients. I haven’t asked. Ha.

Ted DuPuis said:
I’ve already got the truck, just need a trailer.
Click to expand...

“Thinking about a horse...” kinda sounds wrong. We need a different title for your next thread. Ha.
 
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denverpilot said:
“Thinking about a horse...” kinda sounds wrong. We need a different title for your next thread. Ha.
Click to expand...

I can assure you I am NOT thinking about a horse. I have enough **** to do around here that getting horses is NOT on the list.

There are so many around here with horses that it makes much, much more sense to rent.

To your response about horseback riding not making sense to you, that was all very interesting to me. It just goes to show the variety of symptoms, level of symptoms, and what works with MS and derivatives thereof. Like I said earlier on, I had a relative who had MS and she was just wheelchair bound and couldn't talk, so that was all I knew of MS. Since then I've seen a much broader spectrum, including yours.

Horses also just aren't for everyone in general.
 
Ted DuPuis said:
To your response about horseback riding not making sense to you, that was all very interesting to me. It just goes to show the variety of symptoms, level of symptoms, and what works with MS and derivatives thereof. Like I said earlier on, I had a relative who had MS and she was just wheelchair bound and couldn't talk, so that was all I knew of MS. Since then I've seen a much broader spectrum, including yours.
Click to expand...

Yeah much of that is where the lesions are located, brain or spinal cord or both ... type of lesions, that one is hard to explain but if you look at MRIs some are on the outside of the cord and wavy (traditional MS lesions) others are in the center of the cord and both sides (traditional transverse myelitis), some on only one side of the cord (more common in traditional MS, which also causes symptoms to be only on one side of the body or stronger on that side) etc.

After that there’s amount of cord or brain affected. In my case LETM means “longitudinally extensive”, which is any single lesion in imagery that extends more than three vertebrae. Mine is seven long. C2-T1 essentially my entire neck.

And since it’s inflammation causing it in some fashion, total amount of spinal canal filled by the larger cord is also important. Mainly because if it inflames so much that there’s no room left in the canal, that usually causes significant symptoms and myelin damage, worse than if there’s still some room in there, and worse chances for recovery. (There’s a couple of millimeters of space left on either side of mine, well at least there was in the first imagery of it which was a little late.). One of the main reasons for mass corticosteroids during an attack is to keep that inflammation from doing that.

There’s other stuff in the journals and a number of pictures of what the MRIs will look like, including changes between no contrast injected into the bloodstream and with contrast. Often MS lesions “flare” brighter in patterns like waves with contrast, where other causes won’t.

Definitely wild the range of symptoms and damage caused. LETM like I have, by definition has a really large area of the spinal cord affected, but can range from paralysis to minor symptoms. Most everyone experiences some sort of nerve pain but a few lucky folks don’t. They’ll have all the other symptoms of numbness and maybe tingling. Most folks also experience a specific list of symptoms and it doesn’t seem to matter very much about where in the spine it is located.
 
Problem with horses is I can never find the damn clutch.

And Nate, I'm told misery loves company. My neck is now nerve sore and inflamed from my first IFR lesson. Reduced mobility, lots of pain. Should be temporary, but is taking a LONG time to go away.

Mrs. Steingar gets all kinds of neuralgia all the time. It was years ago that I saw an MRI of her back and told her that her motorcycling days were over. A few years later a neuro doc looked at a more recent MRI and decided she must be paralyzed. Her back is a real mess.
 
Denver, I was wondering how you were doing now.
Any progress, or news?

I think about how difficult this must be for you, and also missing flying. Maybe this is inappropriate, that it isn’t possible right now, but could you go up and fly with either a CFI or another pilot in the right seat?

I know that you mention that even typing is painful so no need to answer, but just know we are thinking of you and wishing you the best possible.

As I said, I don’t really know you except from here, but you have always been such a help and so supportive, I know I admire and like you and it saddens me a lot that you are going through this.
I don’t know what else to say except thank you.
 
LongRoadBob said:
Denver, I was wondering how you were doing now.
Any progress, or news?

I think about how difficult this must be for you, and also missing flying. Maybe this is inappropriate, that it isn’t possible right now, but could you go up and fly with either a CFI or another pilot in the right seat?

I know that you mention that even typing is painful so no need to answer, but just know we are thinking of you and wishing you the best possible.

As I said, I don’t really know you except from here, but you have always been such a help and so supportive, I know I admire and like you and it saddens me a lot that you are going through this.
I don’t know what else to say except thank you.
Click to expand...
I keep offering.....
 
denverpilot said:
The fried pickles were on the side. Appetizer. Dipping sauce. You could have avoided them. LOL...
Click to expand...

I discovered fried pickles at a place in Midland, TX week before last. New experience for this northerner; persuaded to try something that sounded decidedly unappetizing by my southern colleagues. Damn things are as instantly addictive as peanuts - you can't have just one.

Your remarkable courage shows through Nate. Knowing the challenges to create them makes me appreciate the posts even more!
 
I need to do an update but have been kinda busy. Nothing bad. Some folks were asking “How ya doing?” and I realized I haven’t done an update lately.

Will try to get to that before the weekend is out.

Precautionary MRI on Monday of the Thorasic to make sure all symptoms are coming from the cervical lesion. Also messing with trying to find a physical therapist with neurological specialty to get after the right hand aggressively. (I’m told some shops will call that Occupational Therapy instead. Don’t care, neurologist said they agreed when I said I wanted to work on it, whatever it gets called. Ha.)
 
denverpilot said:
Haven’t posted here in a long time for ... reasons... but realized there’s a few friends here who don’t do Facebook or any of the other places I hang out.

This is the shortest version of this I can manage. Been posting some longer stuff on FB once I realized there was little concern about even being able to fly, let alone get a medical renewal.

Yes, have been in contact with Bruce throughout the whole thing. He’s provided solid advice and even some predictions that were eerily accurate. It’s clear he knows his stuff and has been doing his profession for a long time.

Been essentially grounded this entire year. Did fly one flight I think during a period where symptoms were very low and I thought improving. What’s going on...

Sept last year, lower back issues. Diagnosed as possible slipped disc. Unknown if related to what’s going on now but was how I ended up tied at the hip to an orthopedic surgeon and his great physical therapy staff. Also found oddball liver numbers and other numbers. Later determined to be sensitivity to ibuprofen and NSAIDs. Never been a fan of drugs but the back thing had me taking max “safe” dosage for ibuprofen. For me, it wasn’t. All has gone back to normal there, since March.

Christmas 2018: Started having odd small neurological symptoms in arms and hands. Burning sensation on top outside of arms, numbness, tingling, burning, and such in hands.

MRI in late December showed moderate spinal stenosis in cervical spine mainly centered on C5-C6.

Physical therapy starts back up. PT starts struggling wjth constantly changing neck, back, shoulder, and arm symptoms. Very frustrating for him as a good neck and back specialist.

Along the way ortho starts talking about doing neck surgery but neuro symptoms start showing up in thighs and feet. Numbness to light touch sensors. Ortho wants to rule out peripheral neuropathy even though A1C and such don’t show diabetes. Neurologist referral and ECG/NCS tests. Strangely these come back negative indicating spine and central nervous system involvement.

Eventually (with a little poke from Bruce who reminded me I would need to anyway) not long after I schedule to do a formal office visit with neurological diagnosis specialist who did the other tests. At this point ortho is starting to talk about a disc replacement with an artificial disc at C5-C6.

Neurologist does an analysis and orders another MRI.

MRI is on a Thursday. Friday morning I get a call asking if I can come over immediately to see the neurologist during his lunch hour the day before he leaves for vacation. Well crap, that can’t be good news.

Meet with him and he says MRI shows a large spinal cord inflammation area and some possible damage from C2 down to nearly T1. The official starting diagnosis is “acute longitudinally extensive transverse myelitis”.

He also orders an immediate round of mass IV corticosteroids which I learn later is a fairly mandatory initial treatment for some nasty possibilities with autoimmune diseases including things like MS. Basically it’s to smack down all inflammation in the body and stop the immune system cold from attacking your own cells, in this case, spinal cord nerve cells. The treatment also gives some time in case any of these sorts of disorders have a tendency to relapse quickly. This time is used for some other tests.

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.”

He sets up a referral to the office’s MS and CNS specialist doc two weeks out and tells me to get the steroids done ASAP. That takes a few days, done.

Meanwhile blood tests all come back negative including some for some really nasty stuff. I think this means I’m out of the woods for those. Still, I’m reading about all of them. None of them sound nice.

Meet with second neuro. She’s really good. Started one of the major metro area MS clinics many years ago. She drops the whopper...

Even though you tested negative for antibodies for Neuromyelitis Optica, there is an anti-body free version of it, especially during time periods between attacks... and because it’s so dangerous for paralysis and even death, we must treat you as if that was the cause of this attack because that’s the closest thing we have to your imagery. You’re being placed on an older MS drug by infusion every six months that keeps relapse attacks of NMO symptoms lower and can possibly even stop them. Your neurological symptoms are stable and if there’s any sign of change at this point you need to beeline it for an ER, tell them you’re an NMO patient, page the neurologist on call, and have them start you on IV steroids immediately and have them contact us. Your symptoms likely will not change much and if they do it will be slow. The pain symptoms now mean we talk about long term nerve pain management.”

Anyway there’s more to this story, but the hand pain is the major “shouldn’t fly” symptom, along with the drugs they want to try all having various levels of FAA “no go” attached to them. (Some okay after not being on them for days, others worse.)

Thumbs are not as affected as anything else in the hands. This makes typing this possible. Regular keyboards are torture at times. Drugs are managing that and after a couple of weeks of no work it was so bad, typing on a normal keyboard, I’m back to a solid five hour capacity for that, more if I push it, with pain meds done correctly at the right times of day and dosage. Driving kinda sucks when it’s bad, not awful at other times.

There’s also leg involvement, feet, small of back, and buttocks, all of which is mostly numbness. And very minor bladder and bowel symptoms (not being helped by the pain meds).

So... there’s the story. Unconfirmed anti-body free NMO, and a large area of transverse myelitis in the spinal cord in most of the neck, and a whole lot of waiting to see what changes. New MRI in 6-9 months.

Possibilities include everything from “we don’t know, could have been viral or an infection and no more damage will occur” all the way to a massive NMO attack leading to paralysis or death.

In *confirmed* NMO, it attacks females far worse than males, but everyone ranges from relatively major but non-life or mobility neurological symptoms like mine, to paralysis of all four limbs and eyesight loss in rapid timeframes. Also in confirmed NMO cases, some studies have shown the five year mortality rate to hit 40%. The vast majority of those, females.

A fairly common change in diagnosis *if changes are seen in brain or spinal MRI* is finding additional lesions and receiving a solid MS diagnosis. But 60% of TM patients never get a cause.

The downside of not knowing is the immune suppressant drug has to be administered for at least two years, you have to decide whether or not to continue it for another two-three years. Relapse of NMO can still occur for a lifetime.

So there you have it. Not flying and mostly just concentrating on my own health first and lifestyle changes and adapting to the hand issues right now, which is going as good as can be expected with spinal cord damage. Way better than LOTS of people with TM or NMO diagnoses. WAY better.

Airplane is still co-owned and being flown. No intention of bailing out for at least two years.

Do miss flying a lot but also very happy I completed the lifelong dream of earning the CFI SE and ME. Really glad I didn’t save the CFI flying for “someday when I retire”. There’s no guarantees at this point that I’ll be flying again.

Bruce has been wonderful throughout and almost seemingly clairvoyant in his e-mails predicting what the next likely event would be.

If... it turns into a confirmed NMO case, there’s roughly only 1400 a year in the US, and 80% plus are females. I’d be in a group of males of less than 300 a year diagnosed with it.

That’s all I’ve got for now. Ask any questions you feel like asking. I do appreciate tons of people who’ve reached out and said they’re sorry I’m going through it, etc. Always appreciated, but I’m honestly mentally in a pretty good place. This could have been so much worse.

Honestly I was raised that nobody ever promised anyone a rose garden. And within this disorder spectrum I’m really doing great. This stuff kills people sometimes in two weeks from initial attack. It can be that wicked.

Anyway. Love ya all, truly. Have been reading PoA while not posting and sneaking in a number of “likes”. And I want to admonish everyone... don’t put off anything you want to do for “someday”.

Go do it.

I had my wake up call when my dad passed away early of a brain stem stroke at 61. I got after the Commercial and CFI. I got them done before this major grounding.

Truly I’m good. Very happy to be here and still upright, no wheelchair and not dead! We’ll take it a step at a time from here. Good docs.

Oh guess I should mention. No cure for NMO. The same for MS but decent treatment options these days.

And the 60% unknown? Who knows...
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Good luck to you, Nate.
 
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