here come the roids....
So, spent a good part of the day at the hospital and the MS clinic. They arranged for an immediate MRI because of the Tysabri/PML paranoia. That's fair. They have to do their due diligence, but this feels pretty much like the usual MS cognitive crap. No problems with the MRI machinary this time.
She (Rae) would like me to do three days of IV steroids. I've done them before, but for 5 days. Maybe 3 days is mildly better. I'm going to do them, as it has been about a month that I've been going downhill. She also gave me a ton of Ativan and Prilosec to combat the nasty side effects of the steroids. The general rule while on steroids is "try not to leave the house any more than you have to..." There's a good description here.
She ordered the blood test for the NAB's. They come to your house to do the blood draw, for some reason.
So, if I am feeling better by next week, after the 'roids, I can decide to do another Tysabri infusion or not. I'll just have the risk of another bad month if the problem is the NAB's. Or, i can wait for the NAB test results and then decide. Luckily, I don't have to decide anything tonight. Just to go to sleep, get up and go back down to the hospital.
Also, I want to track what I'm feeling now, so I can compare it to next week.
weak
Tingling/buzzing in hands and legs
"near" numbness in legs
Dizziness
Fatigue
Difficult to process, thinking-wise
COLD
Balance is off
Red spots on leg
optic flare-up in right eye
The fun part was that she wrote me out an order to NOT go to work Thursday and Friday. That I can do. I expect another couple of days next week as well. We'll see. I'm becoming convinced that a good move for me would be to work half-time at a slightly less demanding job. Not sure how well we could work that out financially, but I'd like to take a look at it.
Hey MS people - what have you done about your jobs or careers? I've been dx'ed for 10 years and I think a change is in order at this point. How did you do it?
She (Rae) would like me to do three days of IV steroids. I've done them before, but for 5 days. Maybe 3 days is mildly better. I'm going to do them, as it has been about a month that I've been going downhill. She also gave me a ton of Ativan and Prilosec to combat the nasty side effects of the steroids. The general rule while on steroids is "try not to leave the house any more than you have to..." There's a good description here.
She ordered the blood test for the NAB's. They come to your house to do the blood draw, for some reason.
So, if I am feeling better by next week, after the 'roids, I can decide to do another Tysabri infusion or not. I'll just have the risk of another bad month if the problem is the NAB's. Or, i can wait for the NAB test results and then decide. Luckily, I don't have to decide anything tonight. Just to go to sleep, get up and go back down to the hospital.
Also, I want to track what I'm feeling now, so I can compare it to next week.
weak
Tingling/buzzing in hands and legs
"near" numbness in legs
Dizziness
Fatigue
Difficult to process, thinking-wise
COLD
Balance is off
Red spots on leg
optic flare-up in right eye
The fun part was that she wrote me out an order to NOT go to work Thursday and Friday. That I can do. I expect another couple of days next week as well. We'll see. I'm becoming convinced that a good move for me would be to work half-time at a slightly less demanding job. Not sure how well we could work that out financially, but I'd like to take a look at it.
Hey MS people - what have you done about your jobs or careers? I've been dx'ed for 10 years and I think a change is in order at this point. How did you do it?
Comments
I stay home with two lovely children who really are angels who cause no drama.
Hey! What am I doing in this hand basket and where am I going?
Seriously, we are dirt poor and scraping by most of the time. I wanted to be a full time Mom before I had MS and I had MS before I met my husband.
You can get by on a lot less than you think. We have one car. We rent an apartment. We went four years without a home phone. Now I have one, but no fancy add-ons.
It stinks being poor and in bad health, but we got a lot of love and TONS of country songs just waiting to be written.
Steroids! Yuck. I once pushed my Grandma on roid rage. You should totally stay home. It is better for the public good.
Yep, I've been thinking about what I can do without and all that. But if I have to listen to country music, i'm out, baby.
It's been about 6 years since I've done the steroids. That's how much I loved them the first time :-)
I wish you could come over and teach me to cook :-)
I haven't done steroids in about the same amount of time as you. In the first six years of my "journey" I did about twenty rounds of five day doses. It was not pretty.
When I was in my early twenties I was told that I was pre-osteoporosis. I blame the high amount of steroids and vowed to use them VERY sparingly. At this point, I think I may well have to be blind before I'll do them again.
That makes my Grandma happy. She old and old people hate to be pushed around.
My husband was amused. "See, i wrote Roger Hodgon a letter when I was a freshman in college!!!! That's how much I loved him" "oh,[sob], this is definitely my favorite song [sob]...."