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Discussion in 'Medical Topics' started by denverpilot, Dec 14, 2019.
That is wonderful news Nate!
Did not know that was even... a thing. Thanks.
Not sure if temp matters or not, but can experiment with water first as time permits.
Ask your other half....bet she squeees at the thought of having one at home.
She’s nodding. LOL.
Apparently a spa thing, too? Haha.
I once called the poison control number to ask.... "What did Polly do to ethylene glycol (anti-freeze) to make it safe to drink?"
They didn't hang up on me... But assured me that polyethylene glycol was safe to drink in my Dr.Pepper!
All that to say, I'm glad everything is going better!
fly to the scene of the incident, or be recovered at the scene of the tragedy
LOL Nate....Next time she goes to have her nails done, go yourself and get a hand wax and see. I'm in jet fuel, hydraulic fluid and PAO fluid so often, the skin on my hands takes a real beating. The place I go for my once a month haircut has a service that is a cut, wash, face massage and hand massage and hot towel face steaming. It's my one luxury and it really helps the hands feel much better for a few days. I do the hot shave a couple of times a year too...
I like the hot shave. Rarely get it though. Never tried the hand wax, but have had the facial wax. Both are very nice.
Might try the hand wax thing next time my wife goes to the spa (once or twice a year).
It’s time for an update, if nothing else so y’all have some more good news about something to read while we enjoy lockdown together, but separate.
The one month steroid step down passed (and I almost missed the alarm I set for it!) without fanfare, and we drop 10mg from the daily diet.
Two days before step down I had the worst case of the munchies I’ve EVER experienced. More like INTENSE un-ignorable hunger response.
My only outings are an occasional trip to the pharmacy (even they have automatically extended anything that has proper refill orders out to the end of refills so that won’t be necessary anymore) and the little country gas station/convenience store/pizza take out combo store at the entrance to the neighborhood.
I walked into the place and bought what I can only describe as... an immense amount of junk food. And then sat in the Subaru literally stuffing half of it into my face on day two of that feeling. Completely knew what was going on rationally but have literally never felt that hungry in my life. I’m sitting there laughing at myself stuffing handfuls of chips, and multiple giant fresh baked (they make them) chocolate chip cookies and other stuff along with two different drinks into my pie hole. Was the funniest and weirdest thing I’ve ever experienced related to eating.
Completely stuffed with junk I drive home with a weird sense of accomplishment like my body is saying “great job!” Hahahaha.
Luckily after a slightly uncomfortable night’s sleep after STILL feeling hungry enough to eat a full normal dinner, because I was um... really full... that sensation has abated for the most part and everything went back to normal. I still ate the rest of the junk slower over many days and had cravings for the occasional five, er, ten regular sized cookies... but nothing like that two day insanity of eating everything sitting anywhere in reach!
Meanwhile... and the more important stuff...
Changes! So weird to experience. Clearly nerves are reconnecting/being uncompressed in the spine/whatever the hell is actually occurring!
Legs. Some up and down on sensory numbness from waist down, feet included but the oscillation from numb to reasonable is seemingly related to the water retention and loss cycle. More water, more numb, dehydrated, less numb. It’s... weird. But fine. And way better than prior to starting treatment.
Walking without thinking about it. Even staring at my phone, not a problem, outdoors on the uneven dirt road or my poor driveway that needs regraded bad after our spring snow and rains. Don’t even really have to pay attention. Gait probably has a touch of Frankenstein in it on “bad” days and none on “good days”. That’s mostly hip flexors and core muscles still, and they’re getting stronger.
Have done the “stairmaster” a number of times now on good days. 11-12 steps depending on if you count the deck itself of our outdoor second story deck. Down to the ground and back up, ten times. Normal pace. Gets me some aerobic exercise besides just walking and challenges all of those atrophied muscles, which aren’t feeling too atrophied anymore. Oddity here is: I can’t feel muscle soreness.
Now I know those of you who work out are jealous of that, but it’s not a good thing when you aren’t sure if you’re pushing it too hard. Ha. So... trying to figure out which “sensation” I do have is actually soreness. There’s a couple of different kinds of “numbness” which really isn’t numb, but crossed wires somewhere. LOL.
Okay now for the stranger change. The hands.
Right hand started growing muscle again. We can actually see it. Big muscle on the outside under the pinky, no longer has a deep depression in it, it’s almost flat again. I assume this is the little tiny signals that normally maintain muscle tone, returning.
The good of this. Grip strength is nearly normal. I don’t have a meter but we used the “let’s compare the two” method squeezing Karen’s hands and she says they’re close. Right used to be stronger so it isn’t normal for a rightie, but I pick up stuff in that hand, or use it to pull on things, with no worries it’ll slip or let go. Also individual finger motion down at the last knuckle has returned, but not well enough to touch type yet with it. Computer mouse moved back to the right side of the keyboard two weeks ago, though.
The “bad”, but working on it... it’s soooooo stiff AND has taken to cramping up because ... muscles are rebuilding and angry. LOL. This is basically affecting the whole hand, the wrist muscles that flex the wrist, and also the tricep which if I just happen to move or lean on it right, just locks up in multiple places for a minute. It’s kinda funny, because I can feel that one coming and also DO feel soreness in the hand. So y’all know how that feels. Additionally even though neurons are doing their thing the muscles and tendons and such are tight, so the hand has slowed down a bit. It’s just a “keep moving it and stretching it” sort of thing. It’s doing like 90% of what it’s supposed to, it’s just cranky about being woken back up after a half a year of being “the claw”! LOL.
One significant downer but okay, see where it goes... burning sensation at times in both hands which also truly feels like stuff reconnecting but left hand technically went “worse” for this one. Same muscle that was badly atrophying on right had a tiny dent in it left and that’s back, and the sensation is limited to there and pinky so it’s not awful. I do NOT *have* to take any painkillers for this, unlike before, and it’s annoying as crap for a few hours but usually gone in mornings. Maybe take an occasional 300mg of gabapentin for it to make it non-annoying to fall asleep, but rarely.
Various other symptoms all better. Bladder seems normal or near normal with all the steroids making me go all the time plus staying nice and hydrated. The above tendency for lots of water to bother the sensory stuff is clearly backassward and I’m not avoiding water while on this many drugs, that’s for sure. So I put up with the weirdness. Bowel still has some days but the usual drugs anybody would use OTC seem great. That’s what the Mayo doc wanted and those also do a bit of a number on where water goes, so all of that is intertwined. I messed with it a week or so ago changing my own doseages of the OTC stuff and paid for it. Ha. Not doing that again!
Neck and back. The original neck pain area where the lesion started around C5-C6 still has a “catch” to it but moves now. All sorts of crackles and crunches and noises with reasonable stretches and movements. And every day it’s a little less tight and things move a little more naturally. I’ve found that any day I can combo up and manage a little more sleep on the same day as a solid walk and maybe the stair workout, the next day, significant pop or tweak and another tight tendon out to the arms or another tiny range of motion returns cervically.
The only other thing that’s “interesting” right now is spinal discs doing interesting things. And by that I mean, if I bend over at the waist when the spine feels tight or compressed, EVERY... and I mean every... vertebrae pops from where I’m bent over all the way up through the neck. This HAS to be a weird side effect of the steroid and water stuff. No violent motion needed, no traction other than the wright of my fat old head. Just crrrrrrrrrack like dominoes. All the way up. LOL. This often relieves a bit of the hand burn thing, which I assume is just taking pressure off of the stenosis seen early on in the neck.
So... there you have it. Walking is awesome, hands are a tad annoying but a ton more useable and likely just getting used to muscles firing up again, feet/legs still numb but location sensors all almost all the way back, neck extra crispy/crunchy right now but only has a tiny spot that hurts and rarely, whole back doing the tango with tightness and then the automatic chiropractor thing, and that’s about it.
Unbelievable how fast it’s changing. I don’t think we could have asked for better initial results. I also wondered as I started the taper for the steroids if that would slow or stop changes but not so far. Even today some gentle neck tilts taught at PT resulted in greater range of motion.
It’s just wild. Seeing your own muscles return to life while you’re using them. Almost no way to describe it. Something your hand couldn’t do yesterday it just reaches out and does naturally before you noticed it did it. Or you realize you just kept walking when the phone rang and haven’t consciously directed the legs for the entire phone call.
Be well, everyone. More updates as things change. Pretty damn happy with the decision to treat at this point.
I don’t think my PT will believe it’s me walking in the door someday when I can do that. No cane, no limp, etc. She will probably have a WTF moment.
Great news! Keep it up.
Thanks for updating us, Nate.
That is an amazing update, Nate! Glad to hear it!
You'll be out jogging in no time. Great news, thanks for the update.
All good news, Nate. Thanks for keeping us posted.
So what you're saying, Nate, is that after all the steroids you'll build muscle and be like a MLB player?
So happy to hear this! Great news/progress all around!
A tip (take with a salt lick if you must):
As we age, it seems muscles cramp up from time to time... Usually as we're repositioning ourselves in bed. And, sometimes these cramps make you shoot out of bed, in excruciating pain, trying every position imaginable to uncramp the offending muscle. Whilst doing THAT jig, contort yourself to the fridge, and open up the dill pickle jar. Drink! Couple of big swallows should be enough. Cramp will subside on the way back to bed.
Now, you can try that spray they started advertising on TV if you want. It works, but it's slower than the pickle juice.
Laugh if you want... But dill pickle juice stops cramps. And I take potassium and Cal-mag to prevent them after a hard bit of labor. Sometimes, that works. I also hydrate, and drink electrolytes... But when all that fails, pickle juice!
Obviously, don't take it if you're allergic. But I swear it works!
fly to the scene of the incident, or be recovered at the scene of the tragedy
Wrong type of steroid. The cheaters take the ones that make you rage and all that. These are the opposite, you get fat. LOL.
Dill, sweet or gherkin?
Gherkin is a flavor?
I know, TLDR, but it's in there! Dill.
fly to the scene of the incident, or be recovered at the scene of the tragedy
This, great for long bicycle rides.
If dill, new or old?New dill isn’t as mellow, fairly sharp flavor, brighter color. Older dill requires rye bread and a really good corned beef from the brisket, none of this round crap.
OMG! A dill snob! Whooda thunk?
fly to the scene of the incident, or be recovered at the scene of the tragedy
Nate, soon it'll be time to retitle the thread - "Maybe it's not permanent after all"
The day is coming, just keep the faith!
No, just a corned beef snob.
If we get there, that’ll be a whole new party announcement thread!
It’ll be a while... but yeah, I let the thought occasionally sneak in.
Pessimistic engineer — can’t count on it until you know the answer will be yes. Which I know is how @bbchien likes to work, too.
Quite a ways away from reengaging the bureaucracy. Or bypassing it with BasicMed. Who knows. Too early to tell.
Broncos sure drafted nice. Too early to tell on them, too! But if Lock can’t hit one of those targets...
Try putting some of that juice on uncooked bread dough. You can make some great things happen with . . .
Nate, your recent updates have made this whole virus thing somewhat more tolerable. Thanks for keeping us in the loop.
Every engineer worth his salt works from a mindset of barely controlled paranoia. We're trained to think constantly about what could go wrong and how to mitigate the possibility.
I'll bring corned beef sadwiches...with lots of pickles!
Honestly that’s why I post it. Figure everybody is inundated with the useless political and other bad news and a little good news showing life is continuing with all the usual ups and downs, even if the media only has one story running... is helpful for everyone’s mental health.
Y’all gonna be mad/sad/maybe a few happy ha... if the stupid Covid gets me... but don’t... if the stupid thing gets me because of the immune system side effects... it gets me.
Back to work. I had to investigate an email problem and found the customer didn’t pay their email provider or it didn’t get processed and was causing all sorts of havoc earlier.
One of OUR vendors checks if your email is valid as a spammer check. Bounces bounces everywhere!
At least it wasn’t our system.
I hate email admin. But it pays the bills.
My rather snobbish Sister in Law was rather upset when we got her young son this for his birthday.
@JOhnH there are other options available, too!
Nate, it's been a while since I added a comment to this thread, but I've been following your travails.
I want to let you know that when I see your posts in any of the forums, I think of your challenges. I also send you energies to bouy your spirits and strengthen your body.
I'm not very religious, and unsure if the transfer of metaphysical energies is possible, but my thoughts of perseverance, stamina and vitality are often directed to you. I very much want you to receive the benefits of these thoughts, and also my prayers for your return to a happy and productive future.
Keep fighting, we all wish you the best.
I used to have that as the "bathroom reader" in the first floor toilet when I lived in San Antonio.
Shoulda picked up Brady, too....
Realized it’s been a while since an update...
Today is the last steroid taper down day for this three month round of initial treatment. We drop 10mg and supposedly at the end of this month we do some sort of follow up. Whether that’s in MN (unlikely) or local tests with Mayo remotely driving the bus (likely) it’ll include another round of MRIs to see what that spinal cord lesion is up to.
Symptoms-wise: Neuro stuff continues mostly to improve. Walking is so improved I barely think about it anymore and little surprises happen regularly like a few days ago I noticed I was talking to Karen and walking backward across my kitchen to put the silverware away from the dishwasher. When I realized I was doing that I stopped and said, “Did you notice what I’m doing?” Lol !
I couldn’t balance well going forward two months ago and needed a cane... just “for fun” later that evening, I was telling a family member about it on the phone. Phone in one hand, I walked up my garage stairs backward. Yup. Didn’t even reach for the handrail. Still talking on the phone.
Impossible two months ago. I’ll take it!
Sensory stuff: Belly down, still weird. Skin numbness and such but weirdly improving. Not even sure how to describe it. Best way to put it is there’s nowhere I can’t sense touch, never was, but it’s all “less numb” so stuff like wondering where a foot is or anything like that just isn’t an issue. A carpet under bare feet feels like a carpet but the sensation ... hmmm how to put this... isn’t as strong as it once was?
As far as walking, driving, all that. Just fine. The thing I noticed the biggest change there was the sensors that provide ankle angle position and the calf muscle sensations both came back strong about the same time so instead of feeling like needing to use feet “flat footed” and move leg up and down like a “stomp” to make sure I knew how and where the foot was moving for pedal control, I just flex the ankle now like usual. Very cool.
Also no slowness to respond. Also difficult to explain but during the worst of the leg and foot stuff, say you felt you were losing balance to the right... you’d know it and know there was a signal from brain to muscles to push your center it gravity back to center, but it would have a tiny but consciously perceptible delay. So you’d lean a tad further the wrong direction while it was happening, then the signal got acted upon but now you needed it to be a little bit stronger but that new signal is delayed. Anyway this led to “wobbliness”.
There’s nearly none of that now. Uneven terrain, hopping through jumping from one foot to another, whatever. Just working. Some muscles were weak at first so jumping around wasn’t advised, but a couple days ago walking our usual mile plus with Karen I attempted a light jog in place and then forward and it was fine. (Other than I hate jogging. Ha.) Again, impossible two months ago.
Okay the mostly up but sometimes down part. Upper back, neck, and hands.
Still 99% off of the pain meds and have been for over a month. Pretty happy about that. Right hand still has some pain but we’re talking mostly ignorable all day and still really only a problem if at all in evenings.
A couple of months ago I had started jokingly calling the right hand “the claw”. From about a month ago until a few days ago it was incredibly improved. Individual finger movement, pretty easy, using it for nearly everything, even managed some signatures on things that look almost like they should.
However, throughout that time the muscles and ligaments and everything coming back in the hand have been TIGHT. And I mean stretch your arm out to the side and your pinky will move, levels of tight. The amount of stretching I’ve been doing in all directions with it constantly is hilarious. Wrist is the same way, as is the entire outside ligament and nerve path down the arm. Various stretches at certain times of day will trigger an immediate cramp in anything from the tricep to a finger which will fold up and lock there for a second. Ha.
So... it’s better. Really is. But working through those muscles coming back is hilarious and annoying. Especially the last four or so days.
Not typing with it yet, but mouse moved back to the right side of the keyboard at least a month ago. Some of that is the touch sensations on fingertips are still ... hmmm... icky. Ha. Doesn’t hurt but feels numb and weird and you don’t feel like using those fingers for light touch work. Grabbing something like a handle, steering wheel, whatever... is fine. But light touch is ... ewww. Ha.
Along with all that tightness comes the connection of all that tight stuff to the neck and the mild stenosis area there. Shoulders are now crunching at all movement like the spine does on the steroids. Ha. Neck has had a couple of days of OW! but just doing all the stuff the PTs taught for that and range of motion is excellent, it’s just angry at times. Mostly evening. Crunch crunch crackle but not painful the rest of the day. This is the area of the neck that would get so bad you’d just have to lie down to get pressure off of it at times all last year. So no complaints!
And that the neck might get angry in evening makes sense. Work went nuts even working from home. We track our project hours and a couple of weeks ago I noticed I almost got a 70 hour week. Too much. That was messing with the neck. But... I could not sit in a chair for four hours without needing to go lie down for 30 min two months ago. So. Miraculous really. Just need to watch it and not quite do that much in a chair. Pop the standing desk up, etc.
Bladder/bowel boring stuff. All better. Not perfect but well under control with a little help from OTC stuff.
Only other weirdness was I had a couple of days of sleepiness out of nowhere and Karen and I were talking about it and it acted like a blood sugar reaction to the steroids. Quite common so we grabbed a tester and monitored and it improved nearly instantly but we do see constant mild elevation in blood sugar.
It’s very consistent, no spikes after meals but slightly high. So we are chatting with Mayo to see if they want any treatment for that or just see how it behaves during the steroid taper down. Well publicized that this happens and follows the steroids. Should hear back in a couple of days on that. Kidneys seem plenty busy but not signs of any major distress.
115 before breakfast this morning so, normal much of the time.
And of course we don’t really know due to cutting the Mayo visit short if sarcoid had managed to get into any other body systems, so the steroids are going after those granulomas too, if they were hiding anywhere and could be causing mild chaos. Ha. Has those weird liver numbers very early on, so ... who knows on that. Kidneys? Somewhere else? Unknown. So... we monitor.
We also have the unknown effect of the incorrect MS drug wearing off as my happy little T-cells return, so there is that. Effects of that wear all the way off by June. Probably a good thing with Ye Olde Covid hanging around.
That’s about it from here. Still seeing massive changes in the positive direction this month. I suspect these will slow a bit in this third month with the steroids tapered to half of the initial dose. Then we go get a peek with the MRI machine and see how much that big bastard lesion has shrunk and they decide on steroid dose for round two... or if they want to add a steroid sparing drug.
My guess, just by symptoms, is that thing is shrinking pretty well. Probably not there yet and we go back to the high dose and another three month taper, but that’s total guessing by the symptoms responding way better than I thought they would with the initial possibility of “3 months to two years” of steroid treatment.
Pretty damn fun. And weird. Been trying to explain what it’s like to folks to have an entire muscle group start working overnight. Go to sleep, wake up and say, your hip flexors behave almost normally the next morning. And you walk a little funny for a couple of days getting used to them being back to full responsiveness. A week later they also feel like they’re almost as strong as they once were. It’s just... fascinating. Outwardly all anybody else sees is you’re walking more normally. Karen says she sees that. From the inside you’re still distracted by the sensations.
Self assessment wise... if we can get the hand to stop cramping up, I don’t see any motor or pain or cognizant skills in the way of flying myself around. Of course I still have a long way to go on “stable” symptoms, but just as a point in time snapshot assessment, the hand is the only thing questionable to me and most of the day it’s fine.
As @bbchien asked once very early on... “can you pick up a paper clip with two fingers from the desk?” Yep. I can. I don’t LIKE it yet, feels annoying, but we will see how it goes!
Having weird fun with it really.
Time for steroid 1 of the day and a work meeting in 20 min!
Be well, all. Fun stuff.
My dog had XRays and he has spondylitis and partial ACL tears. Poor big guy.
Vet prescribed gabapentin.
I joked I’m not taking mine anymore, could the dog use it?
Answer... yes. Hahaha. At his dosage level we have months of supply.
He’s doing well on it and an anti-inflammatory drug and some shots in his knees.
I told him he’s a creaky old man like his owner.
And no. Just no. Broncos do that I find another team to cheer or just give up on football forever. Hahaha.
very cool update, Nate. Like the old joke, you'll be ready to play piano at Carnegie Hall any day now!
Glad to hear things are going well!
it’s just as well. I can tolerate watching some Bucs games for the next two years, but there’s no way I’d watch the Broncos!
Great news, Nate! Thanks for the update.