[Erin524]

Does anyone know how quickly I should be expecting improvement after starting oral Prednisone?

I'm on the third day of a taper. It starts tapering down tomorrow. Should I have felt improvement by now? (there might have been a little improvement in my feet, but my torso feels a lot worse than it did. numbness begins at about the bottom of my ribs...or just below the lumpy bits of my chest area, and travels down on both sides now to my feet.)

I'm already considering (definitely planning on) asking the neuro for the more expensive and pain in the arm IVSM as soon as I get up tomorrow morning. (assuming I can get up)

I feel like I'm wearing a corset around my ribs and stomach and someone is pulling it tighter. The tightness in the small of my back feels a little better (that's moved up to the center of my back), and my feet dont quite feel as numb, and are a lot more tingly...I quit wearing socks because I think the socks were making my feet feel like they were number than they were.

A problem I was having with a certain body function (sorry...TMI) seems to feel like it's gotten a little better.

Basically it feels like I'm more uncomfortable in the torso area.

This really really really <bad word> <bad word> sucks!

[Erin524]

I've come to the conclusion that these steroids are not doing anything for me other than giving me insomnia.

Symptoms seem a little worse (the numbness has gone higher just in the last few hours. Up to just below the sternum now...gone steadily higher over the course of today) The numbness is pretty bad in my feet, but if I'm not wearing socks, isnt as bad as it was yesterday.

Calling the neuro tomorrow, and begging for IVSM or anything else he'd give me to try to stop this thing. I dont think I'm sleeping much tonight, even tho I'm exhausted.

I was just using my mom's TENS unit. I was experiencing what I think was THE HUG from HELL! I got desperate and decided to experiment with the TENS to see if it would help.

I put the electrodes from the TENS on the areas where it was the worst and used it for about a half hour. It seemed to help, but now that I've taken it off, the horrible sensation is coming back.

To make everything that much more annoying, the rest of our house guests arrived tonight. I am not happy. They're going to be here for quite awhile, and I feel claustrophobic already. Too many people. (3) One is a 12yr old, and while she is related to me, I'm not real comfortable around children, and right now, not feeling good. It just feels like it's going to be causing me a lot of serious stress right now.

I feel like crap, and now I feel like I have no privacy whatsoever and I have to figure out a way to get my butt to an outpatient infusion center for some juicy 'roids. Oh, and also take care of my mom and her now healing broken shoulder. (not sure the house guests are going to help me with that)

Those house guests, from what I've been told, could be with us a few weeks to several months. This is not going to end well. I can tell. I may have to use my MS as an excuse to pressure them to find their own living arrangements sooner. (hey, at least the MS can come in handy sometimes)

My mom doesnt react well to change and stress, and I can already tell she's having problems. She freaked out that the youngest house guest is sleeping on our glass enclosed deck. (that's gonna be warm in the morning...it's east facing...at least it has blinds and an air conditioner/heating unit on it) She decided to try to sleep in bed with my dad tonight, rather than sleeping on her recliner where she's been more comfortable. Tonight was the first night that I havent had to "tuck" her into her chair. Hope she gets a better night's sleep than I'm going to get.

I'm going to go take my first shower in four days (better take a phone with me just in case. Not totally steady tonight) I'm tired, but I just dont think I'll get any real sleep tonight. Last night it was like sleeping on rocks. Plus, this HUG thing is seriously putting a damper on things like breathing.

Gonna go see if a cool shower helps things. I think I'm going to have my dad put a grab bar in my bathroom this week. (it'd help my mom if she ever uses my potty or has to use my shower. My bathroom is the only one that doesnt have any grab bars)

edited to add:

just in case anyone was worried about me taking a shower at 3am when I'm unsteady and everyone in the house was asleep. I made it in there and out without falling or killing myself. (I was really careful) Only reason I feel any better is that now I'm clean with clean hair. (and cooler too. Might let my hair air dry) I'm still horribly numb and feel like crap, but at least I'm cleaner now...that feels good at least.

[Catch]

Sorry you're still having such a bad time. I've only had success with oral steroids once, and it was a minor flare. It doesn't sound like you are going to improve quickly without the IVSM. I did a 6 moth "push" with IVSM a couple of years ago, and was symptomless for about 3 months after, and only very minor sx for another 4-5 months. That was three days back to back IV's then once a month for six months. It was a pain, but being sx-free was amazing, if only for a little while!

[barb02]

Erin -- sorry you were having such a rough time in the middle of the night. Steroids can increase your anxiety. I have had that crushing feeling around the left side of my rib cage for the past three years. I assume I have permanent damage. At times it is just annoying and at other times, it is horrible. But unfortunately, it is always there. For some reason when I lay down, it bothers me less. Hope you get some relief with IVSM.

[Dejibo]

Erin, in the past when I took oral steroids, I found them to work within 48 hours. They made me jittery and kept me from sleeping, but they worked.

I am sorry you continue to struggle. hang in there.

[SallyC]

We are all diff., but, oral Pred. never worked for me and IVSM only worked once and it took about a week to show good improvement.

[Erin524]

I wasnt seeming to get anything from the steroids but insomnia. Maybe a little less tingling in my toes, but everything else has been feeling worse.

I got thru to my neuro this morning, and he said that I could go ahead and get the IVSM. But! That I had to go thru my regular doctor to get them. (he made me do it that way last year when I had the diplopia too)

So...I'm waiting for the regular doctor to get done writing up the order and scheduling me. I called them back a few minutes ago to see what was going on. Told them to try to get me in tomorrow. The nurse seemed a bit irritated, but said she'd try and call me back as soon as she could, but she was still waiting for Dr. C to write up the order.

Neuro told me that I could taper down after the IV with the leftovers from my current oral Rx. Told me to keep taking it until the day they can get me scheduled in. (which better be tomorrow) and then save the leftover oral pred for tapering down once I'm done with the IV. He always writes the Rx for a bit over what I actually need, so hopefully I'll have enough for the taper. (I still have 6 extras from last fall, and my mom has a nice stash of oral Pred upstairs from an allergy/asthma problem she had last year. So, I'm pretty sure I'll be able to taper down just fine)

I finally got some sleep this morning...for about an hour...when the houseguests decided that the wood floor directly above my bedroom was dirty and that they needed to use the noisy vacuum to clean up. At EIGHT AM!!! (that wood floor right above me, is like living inside a drum at times. Noise goes right thru that floor and it's directly over my bed)

Sleepy, grumpy me, on steroids and in the middle of a flaming MS flare was not happy. Even more unhappy to get told "yeah...whatever..." by one of them when I kvetched (complained) about getting woken up after finally falling asleep. Luckily I'm exhausted and MSish and do not have the energy to commit a homicide this morning. I wish I could say they were out trying to find themselves a more permanent place for themselves to live, but they just HAD to go on a day trip to South Dakota. (at least they're not here, driving me nuts)

It was nice that they were trying to clean up after themselves, but not at 8 in the morning. They know I'm feeling like crap and not sleeping well. But, they dont care. They were loud last night too. It just bugs me...whenever I've been a houseguest, I try not to get in the way of the host and I try my hardest to not make any noise if I can help it. Especially if I know one of the hosts is sick.

I still havent fallen back to sleep after getting woken up. I hate steroids! (and houseguests!) At least the houseguests are gone till later tonight.

[Erin524]

The nurses at my regular doctor's office finally caught up to Dr. C and he FINALLY got the order written for my IVSM. Yaaaaaay!!!

He wanted to talk to my neuro personally, so he had to catch up to my neuro and talk to him on the phone. Probably why it took all freaking day. Guess they were playing phone tag.

They finally got it all written up and faxed to the infusion center. So, now I just have to wait for the infusion center to get everything set up and for my doctor's office to call me back to tell me what time to be there. (better be tomorrow!)

So, now all I have to do is show up when they tell me what time and offer them an arm to poke at...and then sit there and be dripped.

I hope it works!!!!!!!!!!!!!!