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Discussion in 'Medical Topics' started by denverpilot, Dec 14, 2019.
That is soo encouraging! Glad to hear it.
Mayo doc said just check in with your GP about the blood glucose, which makes sense. He had no immediate concerns.
So... first “virtual appointment” with a Doc scheduled for this afternoon. That seems weird.
But I hadn’t had a chance to update the GP (who was already fascinated by the initial Transverse Myelitis diagnosis, he’s an older Doc and had never had a single patient) that the diagnosis got even more rare! Ha.
So I bet he’s even more fascinated now.
“Hey doc, now we’re into the 200,000 per year range for sarcoidosis and only 8000 a year for Neurosarcoidosis... and even lower than that for spinal only involvement and no brain.”
I’m officially an odd duck. But y’all knew that!
Nate, can we blame oll of this on Covid-19?
Doc said to monitor and if glucose doesn’t fall with steroid taper, give a holler. Also if Mayo goes back up on the steroid for a second round.
He may prescribe a temporary oral diabetic drug during high steroid periods but not as we head into the lowest steroid dose.
See what that does first.
Happy for all the improvements! Prayers that they continue.
fly to the scene of the incident, or be recovered at the scene of the tragedy
Nate, I am so happy that you fired your old docs. SO happy for you
Way to go Nate, there is a lot to be learned from this for all of us.
On the final step down steroid level for now and a reasonable breakfast, glucose was 72 after my mile walk.
Looks like the GP made the right call to do a “wait and see” on the glucose level as the steroids lower.
Also good to know it stays up on the higher steroid doses. Now that I have the tester it’ll be easy to keep track.
Some of the steroid Superman effect has worn off at this new level. Right hand hurts a little at night and right leg is a little weaker, but if the gains so far we call that 100%, it’s a 10-15% backslide. Still good.
The mile plus walk is just a little slower on the uphill parts.
Hey it’s time for an update I suppose.
There’s been good and bad this time, so apologies if I can’t be a total upper for your Covid induced captivity.
Few weeks ago, the steroid taper dropped the steroid from “insanely high” to only “this is bad long-term” high. Ha. Three monthly steps.
At the last taper some neuro symptoms started to return. Not anywhere near where they were but disturbing. Just because you don’t want to reverse.
The reality is, getting steroids past the blood-brain barrier is tough. So we have probably learned at what level it stops getting in there for me. Everyone is different.
Also along that same timeframe the steroid side effects started showing up. Blood glucose is constantly elevated. Steroid induced diabetic type reaction. Really common. (They usually tick off your liver and even though you’re producing insulin and the pancreas is fine, the process of using it gets disrupted. So usually when you come off the steroid things go back to normal.)
Also realized Mayo had done a quickie overnight O2 study while I was there and saw one dip they didn’t like and then we all pretty much forgot about it when they kicked me out.
So I got ahold of my local GP to catch him up (he about had a heart attack... his assistant wrote Neurosarcoma instead of Neurosarcoidosis! LOL! Waaaaaaaay worse!) and he’s now going to manage both of those things. Mayo monitoring.
Since I’m still discouraged from wandering out too much, and because Mayo ultimately wants to look at multiple things in upcoming imagery (we also had much of the bigger picture sarcoidosis stuff bypassed by leaving for home immediately, because the treatment didn’t change... deal with the neurology first and that’s mass steroids so it’ll wipe out sarcoid anywhere else in the body anyway) — local GP smartly asked them, “What about just putting him on O2 at night temporarily until schedules work out — then we see if it’s sleep related or something else?”
Mayo liked that idea. They’re also fine with him prescribing an oral diabetes med temporarily while on the steroids if glucose numbers remain elevated.
So that’s the new stuff. Managing.
We went back to the somewhere between “OMG that’s a lot of steroids” initial dose, and the lowest dose now — and that’s sent the neuro stuff back in the correct direction. For the time being.
So. Next steps — Mayo had another long multi-department consultation about me and decided to try to avoid travel still.
Orders to ride the MRI tube again, full spine, and also chest CT with contrast to get a peek at any heart, lung, or lymph node changes after 90 days of steroids. Those will be done here locally in about a week.
Once they have those, if they see anything they don’t like, travel. Back to Rochester so they can get whatever they need tested done quickly.
Either way probably a trip out at six months no matter what.
If they don’t see anything bad and like the spinal cord progress on steroids, then we head into what are called “steroid sparing” drugs.
Not a lovely drug but when I asked the pulmonary Doc at Mayo about side effects and how nasty it seems, he joked, “Oh, we use those drugs because the long term effects of the steroid level you’re on are WAY worse!”
Lol... well! Okay then!
Still... even the household nurse AND a psychiatrist friend both said “whoa!” to that drug. It’s... sometimes not well tolerated.
But... the Mayo neurologist is still kinda chuckling in the background at all of this and saying “I told ya so...”
Getting sarcoid stuff out of spinal cords is just a massive massive steroid dose and often the sparing drugs on top of that. She said so the first week there and said, “You ready for this?”
She knows nobody even knows what she’s really asking and just smiles. When pulmonary asked her to consult she repeated her original assessment... get it out of the spinal cord and it won’t come back... deal with the side effects.
So... walking still good. Slight balance issues came and went as the steroid went down and back up. Right hand pain increased and decreased. Still not taking any of the pain meds but did do like three or four single capsules at night in the worst of the taper down. Back to none.
(Not sure if I mentioned it last time but my poor 100 lb boy dog was hobbling around and ultimately the vet found he has old injuries to the equivalent of his ACLs and spondylitis in HIS spine, so he’s now on an anti inflammatory and gabapentin. I laughed because I don’t take mine anymore and asked the vet if mine was okay for him. She said yes. So the dog has like a year supply of drugs now even after cancelling my prescription. Haha.)
Local doc is handling — what I’m starting to think are just the beginning — of crazier side effects and is tossing some O2 in me at night here shortly (he’s working on the orders) which he says will likely help the whole process along too. When I sleep well and for longer periods my neuro symptoms drop and stay down. Doesn’t take much. A couple extra hours and big changes.
Certainly proved all bladder issues that were neuro went away. Still some bowel but those are a million times better. By proving it, I mean the diabetic reaction to the steroids means I get to go through more water than I should in a day! LOL. Annoying. But normal at the moment.
So. The bad was it reversed a bit. The good is everybody on the team got it under control and now we take a peek and see how much this crap has shrunk.
How much determines dose and aggressiveness of steroids and the sparing drug. And if any heart, lung or other nastiness is seen, that’ll factor in also.
Essentially the neuro said they’re always shooting for about one year from start to maximum shrinkage whenever possible, and everyone’s body reacts differently. They get limited on how much steroid and sparing they can do and the longest is two years on these stupid high doses.
In other news, the awesome pulmonary Doc at Mayo is headed home at end of next week. He is a fellow from Cleveland Clinic and time to go back to Cleveland and share all he learned with colleagues and patients there.
(Oh fun, moving during Covid.)
Part of that long meeting about me was seeing which attending/ supervisor is taking over my case and assigning themselves or a new fellow, as well as the neurology consult. He gave me the new Doc who’s in charge’s name and tips on how to trigger the Mayo messaging system to reach the assistant who will then get automatically notified to flip the Doc on my case, etc.
He called and talked at length after hours on a weeknight, closing out all his long term patients. Super guy and clearly very engaged.
Cleveland is lucky to have him.
So kinda in the thick of it now — but confident that everybody has a plan. And glad we got the reversal back toward the positive in neuro symptoms.
Watching the sugar, testing the blood levels, eating healthy, working a ton from home, organizing all the Comm back and forth with all these Docs, and basically just plugging away here. It’s kinda boring in a way compared to the initial flurry of activity but still fun. Kinda like having a second part time job at times. Ha.
Worst symptom right now I’d say is right arm and hand cramps occasionally. The neurons are partially reconnected and much happier but the muscles are grumpy about it at times. As are the ligaments and such on steroids. Tight.
So you stretch actively and constantly without really thinking about it, and once in a while one of the muscles gets grumpy and cramps up. Ha.
“I don’t want to play right now!”
I’d love to go do some PT for all of it but still not recommended.
Oh. Almost forgot. Steroids mess with calcium too but can go either way. So that’ll get checked here shortly as well. If it drops, supplement has to be done of it and Vitamin D. And bone density has to be monitored. If it spikes, well I dunno what they do for that. But they’re suspecting it’ll be low so I’m already on OTC supplements for that.
Nobody is too concerned about that one at the three month mark.
Joints cracking and popping like popcorn I’d also say is mildly annoying but par for the course right now.
Again, nobody concerned.
The most commonly said thing to most symptoms right now is, “Yeah. You’re on a lot of steroids.” Haha. Definitely in the steroid side effect weeds now!
Today was 25th wedding anniversary. We chilled at home with some chicken and veggies and remarked we’ve been through fires, and floods, and all the usual and now a pandemic... whatever!!
If you see me start building an Ark in the driveway... mmmm.
When even the GP asks, “So how are you feeling on all those steroids?!” you know he was wondering if it was a typo. Ha.
I HAVE talked to others I’m MORE which just floors me. OMG they must feel terrible.
(For those wondering it was 40mg prednisolone for 30 days, 30 for 30, and 20 when symptoms reversed. Back to 30. I saw one patient on 80 in one of my groups! But short term. Dealing with a flare up of multiple autoimmune issues. Still. Insanity. That’s a ton.)
It’s also fun to feed the stoner dog my drugs now. LOL. He’s much happier and active but zonks out occasionally after his pills. I know the feeling buddy! Ha.
He wants a cookie now.
Methotrexate is certifiable
Thanks for the update! Sounds like a balancing act between the steroids helping you and the side-effects. I guess that's true of many things, like the other item in the news these days.
Thanks for the update, Nate! Let's hope that things progress in a positive direction!
Damn Nate, that's a lot of stuff, glad you are feeling better.
That’s usually what the docs say about me for a completely different reason, Bruce.
Appreciate the info. Still looking like a long haul from here and once it’s over, I’d likely be long off of that drug and hopefully all the others, too! Still going to be quite a while I think until that first step... six months of stable symptoms!
Not like I don’t have plenty to do, but it’s weird to just wait around and see what happens on this stuff. We have so many things in our society that are fixed in days, including many that are medical, that we get really used to it.
The psych doc I mentioned works with kids. I couldn’t do that. Rough.
She’s moving here from Boston. Opening a new clinic and practice. Exciting times for a young Doc. New practice, new space, hospital happy to feed her cases... all sounding really good for them both.
We have known her and her husband for twenty years. They asked if they could have a “few things” delivered to our garage for her new office.
The third garage is now full. Hahaha.
All of the new furniture for an 1800 sq ft clinic is sitting in my garage now.
Never underestimate a psych doc who has known you for 20 years. She KNEW I wouldn’t complain! Hahaha.
FB has all sorts of problems but I find the “memories” thing interesting sometimes.
Today it popped up my memory of exactly a year ago of one of the infusions.
The interesting part. Symptoms are nearly identical today as they were then. Neuro anyway.
It got a lot worse from there and then a lot better.
Big fat U-shaped symptom curve. Or V-shaped. However you like.
Exactly one year ago today. Same place on the curve, pretty much.
I LIKE that a lot. Big picture wise it helped to see that “memory” pop up today.
(Was also interesting to note the infusion made me feel better then. But we now know it wasn’t the drug, it was the steroids given along with the drug but without continuing them, the effect didn’t last. Easy to see in hindsight. Wasn’t obvious to anybody last year until the downward trend continued into the fall and winter.)
Whoa. A short update.
The diabetic med is pretty strong and 24 hour time release.
So I’m both having fun nerding out measuring (probably too often, but I want data!) blood glucose, and tracking every bite eaten, while also NOT enjoying some medium wild swings on glucose level as I “figure it out”.
Tips so far learned:
Don’t skip breakfast. Holy crap. Elevator to the bottom floor by noon. LOL.
Don’t eat any significant quantity of carbs. Going up!
But also don’t eat zero carb. Can’t quite get to 100 doing that. Feels a bit odd all day.
Enjoy the ride. Range has been 71-144 depending on time of day, eating schedule, what I ate, and so on. And it moves fast if I do it wrong.
But still way better than sitting at a constant 150 with the steroids.
Oh yeah ... timing on when you take the steroids also affects it. Ha.
First few days were better than the E-ticket at Disney. Sheesh. The other good news is I find it LOW far more often than HIGH, so the drug is doing its thing. It also just made it much more volatile.
We noted that ZERO carb probably lowers numbers enough to completely control it just with that, but with the decision to maybe add the sparing drug coming in a week or so, or change steroid level... making a change this week, then another the next week, then re-learning what works and doesn’t... seems overkill.
We’ll wait and see what they want done with the steroids and continue the constant testing to calibrate “how I feel” to the glucose level. Pretty easy once you’ve experienced it.
Wheeeee! LOL! It’s amazing any of us is alive at all with the small amount change windows that are right with this stuff.
I’ll also be quite happy NOT to mess with this sort of drug after the steroids are over with! Holy frijoles Batman. The first time the thing drove me to 71 I was like, “what in the world is going on here?”
Then l started food and timing experimentation, like any good engineer.
Overnight can be slightly problematic. Have to hit a normal number before sleep or toss a little food in, or it’ll fall all night and wake up feeling blah.
Oh speaking of overnight. The temporary O2 is “fine”. Probably helping a small amount but no sense of “wow I’m actually sleeping” like many new CPAP folk say. I wasn’t feeling unrested anyway.
My wife on the other hand, her new mouth guard (still working up her full sleep study starting today actually) is a different human being! She was bad on her initial study. Mine wasn’t anywhere near that.
If anything overnight, the stupid mix of steroids and the diabetic drug make me have to get up and pee at least once at night so that’s annoying... but the O2 seems like the difference was marginal at best.
One place O2 is delightful was since I’m supposed to have it on when sleeping, I fired up the concentrator before a Saturday nap.
Now THAT was nice! Haha. Something about that setup made me instantly fall asleep AND wake back up an hour later, and I was just tired from working until after midnight Friday night.
Nap plus O2 gets 9/10 stars. Haha. Not the intended purpose, but that sure made for an instantly relaxing and awesome nap. Ha.
Definitely nice seeing the wife not choking to death at night anymore though. And the silence... oh that isn’t hurting anything either! LOL. Even her co-workers remarked she seemed like she felt better.
Still haven’t needed even an OTC pain killer in a very very long time.
Hand still hurts/tingles and the steroids causing all sorts of joint popping and locking and rice crispies in neck, that occasionally get uncomfortable in the evening, but sooooo glad to be away from chronic pain meds.
I can’t even express how nice that part is.
Really looking forward to seeing what imagery says on spinal progress. The four hours worth of medical fun machine rides are scheduled for Jul 7.
Still feeding the pills to the dog. He seems quite smitten with his anti-inflammatory and gabapentin. He’s up and bouncy when he’s alert and sleepy about an extra three hours a day which for his age seems “about right” on those drugs. Nice to see him running when he wants to and zoning out when he wants to.
Big dog (me) gives him a little back massage during his evening pets now. I know the feeling of tight back muscles and he’s quite happy to get a little rub at the end of the day. Keeps him mobile until bed time. He went back to evening wrestles with his sister which she’s much happier about, too.
She couldn’t get him to play much a month ago and would look at us like we could get him up and moving after dinner.
If it’s really hot out I noticed he can’t handle it anymore on the drugs. He comes in and passes out on the cold floor tile for a couple of hours. Which becomes part of his two or three hours of “stoner nap” I call it, right after his pills. Ha.
Good boy! Glad to see it helping him out.
He was out “greeting” these folks on horseback the other day. Running around barking hello at them.
Wow! You've been thru a LOT!
Progressing in a 2 steps forward and a shuffle back... Like your trying to get "in time" the army marching way, kinda.
Progress is good. One foot in front of the other... Shuffle... Again....
I keep you in my prayers irregularly... Maybe if I was more regular, you would be too...?
God's got this whether I'm regular or not...
Keep the faith. Best...
fly to the scene of the incident, or be recovered at the scene of the tragedy
Mayo Doc tried to warn me that long term high steroids was going to be a wild ride, but you really don’t quite understand that until you hit it. Hahaha.
Took three months then the body says okay, enough of that you dingleberry. What ARE you people DOING to me?! Hahaha.
There would also probably be a bit more blood work and testing and tweaking things if it weren’t for Covid, but they’re more in a “ahh, we’ll see ya in another three months — you won’t die from any of this stuff that fast” mode right now. Haha. “Here’s a list of bad things, call us if any of those happen.”
I suspect they’ll find some stuff out of whack and supplement those things eventually which will make things slightly more comfortable. It’s common for calcium, D vitamins, occasionally some B vitamins, and/or magnesium and some other rarer stuff to go all out of whack after a while on steroids.
The calcium can go either direction and leads to bone density loss so it’s the one they usually monitor a little closer. It’s the only one multiple docs have worried about.
In my case they said it’s more likely to go low and to take a daily full OTC supplement of calcium and D3 and they’ll check it later. Having some is better than not enough.
Too bad the imagery place doesn’t do blood work. I’d just ask them to order up whatever they wanted to check while I’m there. Also really not against just going to get a blood draw but they’re being overly cautious and know none of it is life threatening.
It’s like when you were a kid and your folks just told you to shut up and take your medicine. Haha. You’ll be fine...
Months of antibiotics has some other fun “possibilities for excellence” too. Hahaha. One warning on that bottle is you could end up with diarrhea for up to two years after ending it. LOL. Thank goodness no signs of THAT.
I really shouldn’t read the fine print on that pharmacy stuff! Engineer brain HAS to read it all... and knows those warnings come from tiny numbers of people who had abnormal side effects... but still. Ha. You read that and you’re like, “oh that would be baaaaad...” Haha.
Nate: Might be worth trying a very light and small snack during the nocturnal pee break to help keep things on level. Not thinking much more than something compatible, but cookie sized and a couple ounces of something to drink at the same time.
Nate - really glad to read your updates and hear about the ups and downs - but mostly really encouraged to hear about the ups! It wasn't that long ago that there weren't very many ups.
Continued prayers for continued improvement, my friend!
Did that last night. Worked well.
Like a Colorado brownie and a couple ounces of gin.
Should help you sleep...
Nate, glad to hear things are still progressing nicely... good luck with the imagery coming up next week. With luck, the news will be good.
Nothing exciting to report. Rode the medical machines today and they didn’t buck me off after eight seconds, so I guess I win. LOL!
Blood glucose — finally getting that weirdness under control. Went way too low in carbs there for a bit which was causing wild swings. Karen is on a zero carb thing and I tried to play along. Didn’t work. Ha. Dumb. Took a few days to figure that out.
Got used to what I need to eat on the drug now.
Chest CT, MRIs with and without contrast Cervical and Thorasic spine.
Either they don’t have an electronic sharing system with Mayo or Mayo wants original resolution or something, so they want the images snail mailed... so will hear from them in X + USPS time days, as to what they see and want to do next.
No significant symptom changes lately. Some minor leg weakness that seems related more to the glucose level stuff than neuro but hard to tell. Could also just need more exercise.