Maybe it’s permanent. Grounding that is.

bbchien said:
Kinda a different treatment plan than before eh?
Glad you made the pilgrimage.... :)
Click to expand...

Place is so organized! It’s hard to describe.

They apparently recently added an Aeromedical dept. Just saw it on an elevator sign. Know absolutely nothing about it.

Ever wanted a fourth or fifth career and to live where it’s -20F regularly? You’d fit right in!

Maybe just teach them classes?

:)

(I have no idea who’s there, how good they are, if you already know them, or anything. Their general attention to detail just reminded me a lot of you.)
 
Quick update.

Seems like not too many awful steroid side effects.

Have to take so many stupid pills (steroid, antibiotic, acid reducer, occasional pain meds if needed, occasional bowel meds if needed, the usual statin for cholesterol, blah blah...) that I set alarms on my iPhone for them. In the isolation stuff / kinda normal work from home for me, it kinda feels like one of those Pavlov behavior tests. Ding, pill. Do stuff. Ding, pill. LOL!

Have seen some minor neuro changes already in less than a week of treatment. Pain levels nearly gone in hand and it works better. Less numbness everywhere else overall including feet which was the big worry if that continued to progress, for walking and driving.

Definitely think my Mayo neuro was right to start this, virus silliness or not. Stopping and apparently (yay) reversing progression of the neuro damage was the clear and present danger.

Also have been off the cane since about two days after the massive blood draw at Mayo. I suspect it pulled a bunch of inflammatory agents out and that week was good and now the steroids doing their thing. The week in between things went back toward the bad direction, so by a couple days back home the cane was desirable and now, on the steroids, not.

Very cool confirmation of this going the right direction. It’s subtle because the cane never was heavily needed, but I felt more confident with it. Now I don’t feel like I need it.

Been kinda busy indoors too much the last two days. Probably go take a nice walk as PT replacement.

PT is setting up telemedicine to help folks figure out how to do exercises safely at home, I may schedule a couple sessions just so they can give hints on what to get to doing as neuro things get better to beat back some of the atrophy that occurred. I suspect I can rebuild some muscle in the hips now if I’m walking this well.

Being able to sit in a chair for four hours without having to immediately lie down from neck pain is also huge. Have to do some of my work at a real pair of monitors and a keyboard.

In all... very encouraged.

Oh... yeah. I also knew it was time a while ago to quit smoking again. Once we had the sarcoid diagnosis it was a given. We picked up nicotine patches and hard candy (the candy ain’t great for me on steroids due to what they do to blood sugar but I know me and the hard candy worked the last time I quit, so moderation...) in MN and I haven’t bothered to count days, but smoking is over with.

Irony... pulmonary doc saw no problems from it all and said it’s not ever been a linked cause of sarcoid but just quit now anyway. Done.

I’ll take up sniffing glue. LOL
 
denverpilot said:
Quick update.

Seems like not too many awful steroid side effects.

Have to take so many stupid pills (steroid, antibiotic, acid reducer, occasional pain meds if needed, occasional bowel meds if needed, the usual statin for cholesterol, blah blah...) that I set alarms on my iPhone for them. In the isolation stuff / kinda normal work from home for me, it kinda feels like one of those Pavlov behavior tests. Ding, pill. Do stuff. Ding, pill. LOL!

Have seen some minor neuro changes already in less than a week of treatment. Pain levels nearly gone in hand and it works better. Less numbness everywhere else overall including feet which was the big worry if that continued to progress, for walking and driving.

Definitely think my Mayo neuro was right to start this, virus silliness or not. Stopping and apparently (yay) reversing progression of the neuro damage was the clear and present danger.

Also have been off the cane since about two days after the massive blood draw at Mayo. I suspect it pulled a bunch of inflammatory agents out and that week was good and now the steroids doing their thing. The week in between things went back toward the bad direction, so by a couple days back home the cane was desirable and now, on the steroids, not.

Very cool confirmation of this going the right direction. It’s subtle because the cane never was heavily needed, but I felt more confident with it. Now I don’t feel like I need it.

Been kinda busy indoors too much the last two days. Probably go take a nice walk as PT replacement.

PT is setting up telemedicine to help folks figure out how to do exercises safely at home, I may schedule a couple sessions just so they can give hints on what to get to doing as neuro things get better to beat back some of the atrophy that occurred. I suspect I can rebuild some muscle in the hips now if I’m walking this well.

Being able to sit in a chair for four hours without having to immediately lie down from neck pain is also huge. Have to do some of my work at a real pair of monitors and a keyboard.

In all... very encouraged.

Oh... yeah. I also knew it was time a while ago to quit smoking again. Once we had the sarcoid diagnosis it was a given. We picked up nicotine patches and hard candy (the candy ain’t great for me on steroids due to what they do to blood sugar but I know me and the hard candy worked the last time I quit, so moderation...) in MN and I haven’t bothered to count days, but smoking is over with.

Irony... pulmonary doc saw no problems from it all and said it’s not ever been a linked cause of sarcoid but just quit now anyway. Done.

I’ll take up sniffing glue. LOL
Click to expand...
Want me to drop off a pint of 100LL to sniff instead....
 
Just walked the outside of the two acres that’s fenced on the property on the driveway, the county road, down a steep bank to the bridle trails around the north and east sides, and across the middle of the other two acres to say hi to my neighbor boy, Twist. Without the cane.

Then because the dumb girl dog couldn’t figure out I was going in the front door but she had to run around the house to come in, I reversed and went around again. LOL

Even had hands in my pockets part of the time. That’s huge.

Oh yeah. Didn’t step in the horse poop either, which required slightly fancier footwork than I’ve been used to lately. Hahaha.

Got that walk in just in time. Snow just started.

f4efda0e128b92a4bf4832cd72e5700b.jpg
 
All in all, great news. I haven't been following this as I should but that's cause MS is kinda personal to me...

I'm glad for your improvement.

fly to the scene of the incident, or be recovered at the scene of the tragedy
 
So.. steroids. Not too awful I guess. Have weird hour long blurts of extra energy sometimes and sometimes the opposite.

Can’t tell if it’s the steroids or just virus hideout boredom haha.

Sleep settled into a decent but weird rhythm that matches the pill alarms on the phone. Ha.

And ahh, taboo topic I suppose but whatever... also constipated. Ha. Either the steroids or the antibiotics. Even taking the big gun stuff doesn’t help much. LOL. Maybe I’ll resume that bodily function in ... June? Ha.

Anyway 95% of the time neuro symptoms lower and happier and 5% something “fights back” and hand pain and banding and neck pain and joint popping and all of it come roaring back for a couple hours every few days.

Something happens that triggers a little inflammation and it goes cuckoo for a couple hours. Definitely mellows out after the next steroid dose.

Something still whacked with water retention, or lack of it. Wrinkly hands and such. Been that way for a while now. Sure that’s part of the C word problem above.

Anyway probably some more minor mysteries to solve with Mayo’s help in a few months I bet. Something goofy with the water stuff. Probably some sarcoid involvement in a different body system. By then steroids may whack that too.
 
denverpilot said:
[snip]
And ahh, taboo topic I suppose but whatever... also constipated. Ha. Either the steroids or the antibiotics. Even taking the big gun stuff doesn’t help much. LOL. Maybe I’ll resume that bodily function in ... June? Ha.
[snip]
Click to expand...

So, for now, you have an excuse for being full of, um, stuff? :)

I'm glad to hear the progress! I hope it continues to get better.

John
 
Nate, glad to hear that things are overall positive.

I have three small kids. Talk about pooing is not at all taboo here. Generally, there's a shout from across the house "MOM! DAD! I'M ALL DONE POOING!"
 
denverpilot said:
So.. steroids. Not too awful I guess. Have weird hour long blurts of extra energy sometimes and sometimes the opposite.

Can’t tell if it’s the steroids or just virus hideout boredom haha.

Sleep settled into a decent but weird rhythm that matches the pill alarms on the phone. Ha.

And ahh, taboo topic I suppose but whatever... also constipated. Ha. Either the steroids or the antibiotics. Even taking the big gun stuff doesn’t help much. LOL. Maybe I’ll resume that bodily function in ... June? Ha.
Click to expand...

Do you like licorice/liquorice? Natural version of miralax.....
https://www.chatelaine.com/health/how-black-licorice-can-help-your-digestion/

https://www.medsafe.govt.nz/profs/PUArticles/December2019/Liquorice-side-effects-interactions.htm

By the way, there are many candies that don't appear to be licorice but have it as an ingredient.
 
Good news, Nate! As to the constipation: the one time I had a high-dose course of steroids, I had the same problem after about a week, close to the end of the course. It was BAD and I ended up in the ER, followed by a colonoscopy - and it was only relieved by the bowel prep. It was never explained, but I had a theory that it might have been due to a spike in blood sugar due to the way high dose steroids mess with glucose metabolism. I assume you're monitoring your blood sugar? That is something I didn't do at the time, but definitely will if I ever have to go on steroids again.
 
azure said:
Good news, Nate! As to the constipation: the one time I had a high-dose course of steroids, I had the same problem after about a week, close to the end of the course. It was BAD and I ended up in the ER, followed by a colonoscopy - and it was only relieved by the bowel prep. It was never explained, but I had a theory that it might have been due to a spike in blood sugar due to the way high dose steroids mess with glucose metabolism. I assume you're monitoring your blood sugar? That is something I didn't do at the time, but definitely will if I ever have to go on steroids again.
Click to expand...

No. Just avoiding too much sugar while doing this. Especially right after steroid pills.

Lots of side effects expected over time. Just trying to be mellow and not kill off kidneys and such. Haha.

I’m sure there’s a number of things Mayo would love to have monitoring on (calcium and Vitamin D already mentioned) but with current circumstances the doc was like yeah... just take the usual over the counter dose of both of those and we’ll call it good.

No point in risking catching the virus for that blood test. LOL. They’ll catch up and make sure I’m not losing calcium and bone density in a few months I’m sure.

I did an ER visit last year for the bowel stuff already, so... used to it I guess. Everybody says it’s neurogenic. No testing done for that, just assumed. Gastro wasn’t even interested in doing a colonoscopy at all. I bet Mayo wants to actually double check all that when we re-engage. They don’t “do” assumptions I noticed.

I walked a loooong way today. One of the roads around the neighborhood. Paid a little for it when I got home (inflammation) but timed it so it was time for the steroid pill. Right leg was a little tired by the end, but really that was great.
 
Realized no update here for a bit. Been super busy, ironically with work.

Anyway...

Walking continues to improve immensely. Did another big walk around a different loop of the ‘hood with Karen and she remarked, “I’m not having to wait for you!” Awesome stuff.

Definitely seeing some side effects of the mad steroid amounts including continued bowel issues and some weird water issues in the right hand. Had a long chat virtually with my Doc at Mayo about them and he said nothing sounded too concerning, all typical and non-specific and eventually a return to there or a good gastrointestinal Doc here will perhaps be in order, but for now, keep hiding out from Mr. Virus.

Also discussed changes in neuro sensations which are “seemingly” more prevalent since the assumption is that it’s things coming back. Both hands have a different muscular burn sensation much more like tired muscles being woken up which I’ll take as a good sign as well as they both seem to have started to bulk back up. Right is always significant, left is essentially ignorable as always.

Also had an interesting redness in the right hand as that happened that perfectly followed the “gloved” neuro symptoms line on the wrist for about a week. I suspect what’s coming back there is some of the “always active” muscular movement that normally occurs all the time and you can’t really feel or see it. But the atrophy meant that now there’s some action and blood flow to feed it and all reddish in there.

Kinda wild to watch. Hand was all splotchy for a few days afterward, now fairly normal and pink.

We talked about that if things were normal this would probably be the time for aggressive PT and OT on the hands but can’t go. The PT is doing virtual visits to help folks make a home exercise routine and monitor them, and he said pursuing that would be a good idea so I’ve made progress before I can go hit it much harder in person.

Just this afternoon the calf muscles and ankle muscles felt like they just instantly tightened up and along with that walking got even faster. Again, things reconnecting I think. Also over the last week or so I can splay my right toes without thinking about it, which is something I never really noticed I lost, but it’s back!

I’ve also seen major improvement in neck and upper back flexibility and can stretch backward without any more than muscular tightness pain and some crackling of the old neck where some mild stenosis is. It’s been fun to force myself not to be a mild hunchback.

Nothing is perfect and no idea if this keeps getting better at such a rapid pace, but man I think they got it. The Mayo doc said similar, that he thanked me for the update because it appears to continue to confirm a direct response to treatment which continues to confirm their diagnosis.

I’ll probably crank up the home standing desk on Monday. Standing and getting things upright feels great. I also need to get after using the therapy putty on that right hand and a bit of squishy sand filled squeeze toy.

The one really annoying steroid side effect is well two newer things. Drinking lots of water so constant peeing. Ha. And if I bend over at the waist, every vertebrae cracks as they decompress. Something weird with how water is being utilized in the body for sure.

Also saw some dermatology changes which has Karen and I wondering if I’ve had sarcoid granulomas scattered in skin (second most common place to find them after lung area) for years. Of course I’m also on a decent amount of antibiotics warding off steroid induced pneumonia so those are having some effect also, but small amounts of little red dots I’ve always seen as “who knows” on belly and thighs, disappeared.

Totally amazed really. No other way to put it.

COVID May still get me, who knows friends? But I’m fully convinced getting started on this treatment course was the right thing for me, and super encouraged by the results so far.

While I was typing this I decided for no particular reason to do some standing squats just because the legs felt like the wanted to. No balance issues, nothing to hang on to, it just worked. Wow. Side to side single foot hops too.

Perhaps ol’ Lazarus here is getting a hand from his Jewish Carpenter friend this Easter weekend?

However you look at life, I hope this reaches you well and encourages you this blessed weekend.
 
Thanks for the good wishes and the same back to you, Nate.
I didn't follow the entire thread so I may have missed it, but have you tried massage for any of these things?
I have a bit of typical neuropathy in my legs and I can massage or pound on them all day long and it does nothing - but when my wife does (I get her to lie or sit on my calves or backs of the thighs, and sometimes rock back & forth) I feel like a new person afterwards!

edit Ice has been my savior. I use it every nite (right now) on my feet which feel on fire (not sure if that is a symptom of yours) and freeze my shoes at work, cycle them out of freezer every hour. (I'm sure you've thought of or tried every possible solution, feel free to ignore)
 
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Let'sgoflying! said:
I didn't follow the entire thread so I may have missed it, but have you tried massage for any of these things?
Click to expand...

I had and it didn’t help much during the downside but I suspect it would be quite helpful now.

The PT does this thing with a flat piece of plastic pushing along the tendons to stretch the outside arm and tendons that go to the wrist, before exercise, that’s divine.
 
Nate,

Great to see the progress. Does this offer some glimmer of hope to be in the air again? Or is this too early...

Tim
 
Glad to hear the update, Nate! Continued prayers for continued progress for you! Happy Easter to you and Karen!
 
denverpilot said:
I had and it didn’t help much during the downside but I suspect it would be quite helpful now.

The PT does this thing with a flat piece of plastic pushing along the tendons to stretch the outside arm and tendons that go to the wrist, before exercise, that’s divine.
Click to expand...
You can do a lot of that yourself with a foam roller.

173b1e79-eb95-4ae7-9927-f7fc3d184769_1.7c9d9e4159bf286174ed9ed7191d14cc.jpg
 
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tspear said:
Nate,

Great to see the progress. Does this offer some glimmer of hope to be in the air again? Or is this too early...
Click to expand...

No idea Tim. I figure that’s up to the experts like @bbchien and the kids in OKC ... or a “brave” Doc willing to go BasicMed someday.

Self-assessment wise I wouldn’t attempt it right now without a bit of improvement in the right hand, but there’s folks who happily fly with one just fine, I know. Just in terms of “normalcy” it wouldn’t seem “normal” to me yet. Foot numbness also would require some re-training but I can drive, so thats 100% do-able with practice to understand pressure sensation levels.

I’m also pretty sure some of the drugs are an absolute no-go, especially the pain meds since they have a brain component to their mechanism. So weaning off of those is probably a critical path item, too.

Right now it’ll just be focus on getting things as good as they can get and then a big ol’ assessment when things are stable. Bruce mentioned long ago to me that one is critical path for OKC also. Stable symptoms for six months. And right now I don’t really want stable! Ha. I want better! :)

PaulS said:
You can do a lot of that yourself with a foam roller.

View attachment 84593
Click to expand...

Got one! Big one for my back. They’re great with the right guidance on how to use and not use them! I really needed the darn thing during the downhill part of this, it helped keep the spine moving in the upper Thorasic area when everything wanted to lock up and be painful.

It’s nice it isn’t “needed” now, but this is a good reminder to use it on the upside to keep limbering things back up. Thanks. I’m sure my PT will ask if I’m using it!
 
Had never measured it.

Quickly measured our “around the block” out here on Google Maps and realized it’s 1.25 miles, not the half mile I thought.

Holy crap. Waking over a mile pretty much daily. No cane. No limp. Just a little draggy at the end!

... was my reaction to that...

:) :) :)

Marathon next week! LOL! No...

Doing my best to push it all upright. PT mentioned a while ago when core gets weak, people drive their stomach forward and rotate their hips. You’ve all seen it in movies and real life when the old man walks with a weird arch to their back the wrong way. PT was making me drive the hips back and engage core.

Much MUCH easier now. Mostly just a “break the bad habit” thing. Posture!

Anyway. So weird to watch it all try to come back. I don’t even make how you explain it. One day a muscle doesn’t really respond much, the next it responds some percentage and you can tell the brain wants it to go more. So you move it.

Created some movement and flexibility exercises for the right hand and I just do those as I think about it. It’s loosening up. End knuckles are a little stiff and sore and still lots of touch sensor weirdness in the fingers but it’s coming along.

Late evening is the weirdest. I’ll get full leg neuro “jumps” like a zap. Won’t kick anything or anything like that but I’ll just feel a couple coming on and one leg or the other will jump a little. Top to foot, sometimes including a foot twitch. Just a few then they quit. Not all night or anything. Usually while dinner is “processing” in the belly.

Blood sugar jump? Body processing salt? Chemical? Nerves trying to find pathways? I really have no idea. But pretty wild.

A mile and a quarter. Did. Not. Know. So cool.
 
Glad to hear that it's improving, Nate! Hopefully it keeps moving along.
 
Nate: If heat helps the hands, maybe a hand wax vat, and do some flexure exercises while submerged in it. Heat from liquid is the big thing that helps mine when they really start hurting.
 
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