Last Monday, I had my first month check-up since starting my MS disease modifying drug, Tecfidera.
I am tolerating the medicine well. I haven’t had nausea and diarrhea since the first week. Sometimes I think I have a bit more energy. However, I often pay for that by overdoing it and exhausting myself for the next day or even longer. My neurologist is hopeful that in another month I’ll be feeling even better.
We did discuss the spasms in my legs and hand tremor that I occassionally have. She recommended Gabapentin for that. I chose not to start that just yet because a common side effect is drowsiness/sleepiness. I will be moving in less than two weeks and my husband is currently out of town. My experiences with the spams and tremors are pretty mild thus far so I’d rather wait as long as I can before starting more medications.
The fatigue is what’s killer. She didn’t offer any medication or suggestions with that. I have seen in an MS support group that some people are on various medications for that. I’m not sure if she hasn’t recommended it to me because I’m not complaining enough or if it’s just early in my treatment or if maybe they don’t help very well in her opinion. Since I’ll be moving, I will bring that up with the new neurologist.
Speaking of my next (currently unknown neurologist), it was recommended to follow up with one in June. At that time, they may want to do another MRI and lab work as it will be about 6 months since the last work up and we should be seeing some improvement from the Tecfidera.
All in all, a good and short appointment. I left with copies of my office notes so I can send that on to the next place.
Right now, I’m trying to keep my stress low by keeping expectations low. That means cutting a lot of commitments and not doing as much school as I would like with the kids. It means more screen time for them. It means more time with babysitters. Fortunately, our primary sitter is trying to save up for a few things so she’s working extra hours before we move. I’m also not spending much time packing. My primary goal is to take my medicine and feed us.
My husband has set up utilities at the new place and has arranged for the movers. He made a few meals before he left and we’ve got freezer meals. I’ve called to set up a few appointments after we move and need to follow up on a few more. I’m starting to browse for potential caregivers but won’t start interviewing until after we’ve gotten there. I’m going back and forth on how fast I need to hire a sitter. We will continue to homeschool (and need to catch up some) but the kids might prefer to do day camp over the summer. It would be silly to hire a sitter and then stop for the summer. However, I don’t know that I can go all day, every day without respite until the fall. Again, I’m trying to not stress about it because that will help nothing. What do you suggest?
2 thoughts on “Monday MS Check-in: First month check-up”
I’m sorry Rose but I have absolutely no suggestions! Being in the UK my kids just went to regular school and no day camp or summer camp. Luckily I had school holidays off so didn’t need child care either.
I really don’t know how you are coping with all this AND a house move! Amazing!
I hope someone has helpful ideas. Take care and good luck with moving.
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Heh, I’m not really sure I’m coping right now. 😀 I’ve had low expectations and am still getting frustrated with things. Oh well. Some close friends have strongly recommended childcare even if I chose to do camp later so I think that’s what we’ll go with. I placed an ad today and will hopefully have some people to interview next week after the move.