The Appointment
Tomorrow I sit down with the neurologist to discuss treatment options. A couple of days ago, he called me to get me to start thinking about Avonex vs. Tysabri. I'm taking vacation this week (not illness-related, I just needed a break and some family time), and this afternoon was my chance to sit down with the computer and do some reading and soul-searching. Let's play Damned If I Do, Damned If I Don't.
On the one hand, there's Avonex. This is my known. I know that there will be hell over the next couple of months as my body adjusts. There will be the weekly disgust as I jam a way-too-big needle into my own body. I never got used to that. I won't ever get used to that. I picture myself in chills on the couch as my 2-year-old tugs on my finger, crying because I can't get off the couch to play with him.
I hate that picture.
The other hand is Tysabri. The unknown, the next great hope. Well, that is, if it doesn't kill you. All I have to do is exchange one morning a month to fill out boatloads of paperwork, hook up to an IV drip, and hope that I don't get a potentially fatal virus. Still, the benefits of the drug are huge - there's so much potential for this to provide a radical change for the better for so many people.
Just not me. Yet.
After wavering back and forth as I read through all of the National MS Society stuff about the two options and the Biogen sites, I just kept going back to Avonex as the right choice for me at this point in my life. At 39, I'm still young, so I need to make a decision for the long term. There's long-term use information on Avonex, while obviously there isn't any for Tysabri. If I were declining rapidly, if I were having attack after attack after attack, if my ability to function was being radically affected, then Tysabri would definitely be worth the risk. But my situation isn't dire enough to take that risk at this point. It's been 4 years since my last attack. Yes, I've had some minor symptoms, but for the most part, my life hasn't been that adversely affected by the disorder. And a good portion of that time was without any medication, since I was either pregnant or breastfeeding for such a big chunk of that time.
My hubby wants to come with me tomorrow to the appointment. I think that's a good idea. I'm so glad that he wants to be so active in my illness. I think it helps him too to be able to do something, instead of just sitting and watching. He's a fixer.
Tuesday, July 18, 2006
Monday, July 17, 2006
No matter what happens, you gotta keep your sense of humor. Like this morning, when the woman with vertigo and vision problems had to fix up her pedicure.
Is it pretty? NO! Duh. But given how chipped up the old polish was, and since it's going to be 100 degrees tomorrow, which means that this is sandal weather, I did what I had to do. It looks better than it did. Sure, that's not saying much, but I'll take what I can get.
Is it pretty? NO! Duh. But given how chipped up the old polish was, and since it's going to be 100 degrees tomorrow, which means that this is sandal weather, I did what I had to do. It looks better than it did. Sure, that's not saying much, but I'll take what I can get.
Sunday, July 16, 2006
Back Under Attack
Wow, time does fly. It's been 2 1/2 years since I've written in this blog, and a lot has changed in those 2 1/2 years.
Let's start with what hasn't changed...I still have MS. And I've gravitated back here for the same reason I started this in the first place. I'm having an attack.
I had an appointment scheduled for last week to touch base with my neurologist. I hadn't had a checkup in a long, long time because of my pregnancies (yes, that's plural), and we were long overdue to discuss my treatment options and check in on the disease. Before the appointment, I started to realize that I was having some problems. Everything looked OK on blood tests, and my opthamologist even checked me out. But things went from bad to worse. My blurred vision (not MS-related, just the typically growing older thing) was now double vision. There was an article in the most recent Inside MS magazine about vision issues, and there was double vision, prominently displayed right after optic neuritis.
Then I realized how much the room kept swaying around me...or me around it. At first I thought it was ordinary dizziness of a mother of two small children who spends way too much time in front of the computer, but it was more than that. As I read one of my MS books, the term vertigo stuck out at me. Vertigo refers to the sensation of movement, and that certainly applied to me. One evening, my husband and I were watching TV in bed, and the TV started to move downward. And it just kept getting worse.
So at the neurologist's office, I was told what I already knew, that I was in the middle of an MS attack. So the IV steroids started again, bringing immediate relief to the vertigo. Unfortunately, now that I'm using the steroid pills to wean down, the vertigo is coming back. Hope this is just a short-term thing. I don't know how people cope with vertigo for any period of time! My mom struggled with it when she was having some ear issues, and whoa, I have new appreciation for what she was going through.
I had to get back in the MRI tube. That's huge for me, since I'm a claustrophobe. It was better this time. I had it done at the same place, but they had a new machine which wasn't as completely dreadfully obnoxious as the previous one. This one was just dreadfully obnoxious. The folks knew exactly how to handle me, and I'm so grateful for their compassion. When the tech told me she could get through the whole set in 17 minutes and 51 seconds, even with dye, I was delighted. (Well, as delighted as I could be, given the fact they were about to stick me in that tube...)
Tomorrow night is my office's annual night-out at the Durham Bulls. Hubby and I are planning to go, but now I'm worried about it since it's so hot outside and I'm in the middle of an attack. With 100 degree heat on the forecast for later this week, I'm pessimistic on how I'm going to feel this weekend, when we're christening our younger son. This is supposed to be a fun and happy week. Instead, I'm wondering whether I'm going to be able to hold it together for the sake of my family. I've already asked hubby to stay home from church two weeks in a row because the vertigo was bothering me too much. I don't have a choice this upcoming week.
At least I'll have some answers. I'm meeting with my neurologist on Wednesday to discuss the MRI and decide on next steps. Right now, I'm hoping he tells me that the disease hasn't progressed too badly, and that we can still focus on efforts on drugs like Avonex or Copaxone. I think I'm going to try Copaxone this time, instead of Avonex. It means a lot more shots (daily vs. weekly), but the flu-like side effects of Avonex dragged me down so much for so long. And with two young children, I want to avoid that if at all possible. I'm already frustrated with how this damned disease is limiting my ability to parent my children how I want to, and I get choked up when I think about the treatment making that even more difficult.
Wow, time does fly. It's been 2 1/2 years since I've written in this blog, and a lot has changed in those 2 1/2 years.
Let's start with what hasn't changed...I still have MS. And I've gravitated back here for the same reason I started this in the first place. I'm having an attack.
I had an appointment scheduled for last week to touch base with my neurologist. I hadn't had a checkup in a long, long time because of my pregnancies (yes, that's plural), and we were long overdue to discuss my treatment options and check in on the disease. Before the appointment, I started to realize that I was having some problems. Everything looked OK on blood tests, and my opthamologist even checked me out. But things went from bad to worse. My blurred vision (not MS-related, just the typically growing older thing) was now double vision. There was an article in the most recent Inside MS magazine about vision issues, and there was double vision, prominently displayed right after optic neuritis.
Then I realized how much the room kept swaying around me...or me around it. At first I thought it was ordinary dizziness of a mother of two small children who spends way too much time in front of the computer, but it was more than that. As I read one of my MS books, the term vertigo stuck out at me. Vertigo refers to the sensation of movement, and that certainly applied to me. One evening, my husband and I were watching TV in bed, and the TV started to move downward. And it just kept getting worse.
So at the neurologist's office, I was told what I already knew, that I was in the middle of an MS attack. So the IV steroids started again, bringing immediate relief to the vertigo. Unfortunately, now that I'm using the steroid pills to wean down, the vertigo is coming back. Hope this is just a short-term thing. I don't know how people cope with vertigo for any period of time! My mom struggled with it when she was having some ear issues, and whoa, I have new appreciation for what she was going through.
I had to get back in the MRI tube. That's huge for me, since I'm a claustrophobe. It was better this time. I had it done at the same place, but they had a new machine which wasn't as completely dreadfully obnoxious as the previous one. This one was just dreadfully obnoxious. The folks knew exactly how to handle me, and I'm so grateful for their compassion. When the tech told me she could get through the whole set in 17 minutes and 51 seconds, even with dye, I was delighted. (Well, as delighted as I could be, given the fact they were about to stick me in that tube...)
Tomorrow night is my office's annual night-out at the Durham Bulls. Hubby and I are planning to go, but now I'm worried about it since it's so hot outside and I'm in the middle of an attack. With 100 degree heat on the forecast for later this week, I'm pessimistic on how I'm going to feel this weekend, when we're christening our younger son. This is supposed to be a fun and happy week. Instead, I'm wondering whether I'm going to be able to hold it together for the sake of my family. I've already asked hubby to stay home from church two weeks in a row because the vertigo was bothering me too much. I don't have a choice this upcoming week.
At least I'll have some answers. I'm meeting with my neurologist on Wednesday to discuss the MRI and decide on next steps. Right now, I'm hoping he tells me that the disease hasn't progressed too badly, and that we can still focus on efforts on drugs like Avonex or Copaxone. I think I'm going to try Copaxone this time, instead of Avonex. It means a lot more shots (daily vs. weekly), but the flu-like side effects of Avonex dragged me down so much for so long. And with two young children, I want to avoid that if at all possible. I'm already frustrated with how this damned disease is limiting my ability to parent my children how I want to, and I get choked up when I think about the treatment making that even more difficult.
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