I went to the neurologist yesterday, to see what was going on with my new symptoms. After some testing and questioning, she determined that it seems like I am having another MS attack. As there’s numbness on my right side this time (instead of the left side like in December), it sounds to her like a new lesion on my brain. She would like to send me for imaging, except in our little, remote area (5 hours away from the nearest city), there’s a two-month wait for an MRI order. I could go to the ER again and wait to get an MRI there, but she didn’t feel it was all that necessary. I’m due for more imaging in June and she thought I could wait that long.
When I was diagnosed at the ER last December, and then admitted to the hospital, they gave me three high-dose infusions of a heavy-duty steroid, methylprednisolone, to stop my body from attacking my brain. While it’s quite effective, it raises blood sugars enormously. The neurologist said she wouldn’t even think twice about ordering more infusions for me now, if I weren’t diabetic. So she gave me these options: go get the steroid infusions but risk my blood sugars being dangerously high or just wait. The attack will pass by itself, but not nearly as quickly as it would with the aid of the steroid. A tough decision for me to make.
“Long-term use of methylprednisolone… can be associated with hyperglycemia, decreased resistance to infection, swelling of face, weight gain, congestive cardiac insufficiency, fluid and sodium retention, edema, hypertension, increased eye pressure, glaucoma, osteoporosis, and psychosis, especially when used at high doses.” – Wiki
I chose to go get the steroid infusions because doctors and nurses alike, when I was in the hospital getting the infusions, commented on how well my body responded and that my numbers didn’t go up nearly as high as they’d expected them to. I’ve been working hard to keep my diabetes in control and my blood sugar numbers have been improving gradually. But while in the hospital, not only was I taking my long-lasting insulin, they were supplying me with intermittent shots of quick-acting insulin, to help compensate for the high numbers from the steroid. The neurologist recommended I get hold of my MD’s office and see if they could prescribe me some quick-acting insulin for these infusions I’ll do over the next three days.
That proved more difficult than I thought it would, but worked out in the end. Fortunately, there was a last-minute cancellation at the MD’s office last night, not with my physician, but another. This doctor was running behind, so my husband and I were at the office waiting for an hour and a half for this appointment. Then I had to fill in the new doctor with what was going on and what I needed and why I needed it. Quite a fiasco, but luckily, he ordered the insulin, the pharmacy was still open (at 6:30pm) and had it in stock and rather than the $250/per vial that the doctor quoted using some smart phone app with my insurance, it cost me $10.81. Whew!
Today I went to the hospital’s outpatient infusion center to get my steroids. Takes about an hour for the bag to empty, drip by drip, so I listened to some music and dozed off. Interestingly, I was listening to the same band on repeat that I was listening to for my three days in the hospital – Against Me! Guess they’re my “hospital visit band”. And hey, the I.V. colour-coordinated with my tattoo, so that’s a positive note, right? Just trying to see the bright side, ya know?
I checked my blood sugars right before my infusion, and this is how they’ve read tonight:
2:08pm – 117 (pre-infusion)
4:30 – 103 (post-infusion)
5:37 – 171 (ate a large veggie/cheese omelet about 1/2 hour before this, too Lantus and metformin)
5:59 – 184
7:02 – 218
8:10 – 263 (took 5 units of Humalog fast-acting insulin)
8:47 – 265
9:24 – 279 (took 5 more units of Humalog)
10:02 – 288
10:36 – 281 (and ate a snack around 10:05 of vegetable salad and salami)
12:53am – 250
My husband and I are both mildly surprised. 70-130 are the target levels when fasting, so you can see when I took mine pre-infusion, it was at 117 and normal. Less than 180 is the target for 1-2 hours after starting a meal, so until some time after 6:00, I was doing pretty good. Even 218 post-meal isn’t abnormal for me. What is abnormal are these numbers on the steroids. Even when I was in the hospital, they totally expected my numbers to hit 500. They only went over 300 once, and the rest of the time they were 275-290. Several doctors and nurses commented how well my sugars were doing. They did administer the fast-acting insulin, but I’m only to give myself some if my numbers go over 300 and stay that way. So it’s looking pretty good so far tonight. I’ll probably come back here intermittently to add the times/levels just so I have it all recorded somewhere.
Side effect from the infusion – my mouth tastes like metal. So gross. Nothing gets the taste out.
Sitting here typing this I don’t feel so bad, fatigued, but that’s been normal for the last week at 7:30pm. However, when I stood up to go feed the cats, and then later stood up to go take care of their bowls, I felt a little light headed, a little jittery (that’s probably the steroids), and my heart beat feels rapid and somewhat strained… as if I just walked briskly for 10 blocks instead of got up from my recliner and walked a few yards into the kitchen.
On the work front, things are looking better than I expected as well. I thought when I called in sick yesterday, my boss would probably be upset and frantic. I told her I’d check back in the after my neurologist appointment and let her know what I found out. I was telling her how I had to get these infusions for the next three days and how my energy levels decreased after a restful weekend. I fully expected her to try to push me back into work, even if it was just for a few hours, whatever I could handle. Instead, she said she was just going to change her ad from part-time wanted to full-time wanted, and that way I could still come in and train the new person a few hours a day (and not be relied on to run the whole office), and I would still be needed to handle all the billing and paperwork stuff. So it’s nice that my boss is able to be flexible in this crazy ass time. She’s recognized the fact that my situation is a little more complicated than many with MS who have an attack, recover from it, and then are good for years, sometimes 10 years, before another attack. I had an attack that started in November, wasn’t recognized until December, and then it took me three months to feel like I had enough energy for part-time work, did that for a week, and bam! Another attack. And I probably had an attack 6-12 months before that that never got diagnosed (but lots of clear symptoms, looking back now). To sum up, she told me not to even worry about coming in this week and she’d let me know what happens with hiring a new person. It’s a mental relief to not have anything to worry about this week except getting to the infusions and getting home.
M.S. - It's Weird 