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Discussion in 'Medical Topics' started by denverpilot, Dec 14, 2019.
Kinda a different treatment plan than before eh?
Glad you made the pilgrimage....
Oh, you sexy beast, you!
Get well, and good wishes to you both as you fight the good fight on so many fronts.
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.)
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
Do you mean tobacco? You are in Denver, after all.
Awesome news, Nate! Hope things keep going in the right direction.
Want me to drop off a pint of 100LL to sniff instead....
Great news! Kick this things ass!
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.
Great news, Nate!
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.
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.
Ah, so you are telling us you don't give a crap?
That's great news, Nate.
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!"
Do you like licorice/liquorice? Natural version of miralax.....
By the way, there are many candies that don't appear to be licorice but have it as an ingredient.
Licorice. No. Definitely not. lol. But thanks!
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.
How's about Dr pepper? I hear that has prune juice qualities.
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.
Ha. All it has these days is polyethylene glycol.