I had my followup with Dr. Goslin today. I had some questions for her, and I wanted her to meet my brother Gecko and my will-be-primary-caretaker and best friend Danielle. Gecko unfortunately couldn’t make it because the poor bastard got a migraine this morning. Suck.
I went in expecting to be taken off the prednisone, I haven’t noticed any change at all except in my weight. I’m all pooufeeh. She did the standard pushme-pullyu battery of tests, and then a little bit of EMG. She decided that I’ve actually gained a little (liiiiiittttle) bit of strength. There was a nerve signal she caught slightly today that she wasn’t able to get at all before. We’re going to keep me on the prednisone for another month, and if there’s another increase, then we’ll discuss more permanent treatment along that line, because prednisone forever is not an option. She not only told me not to worry about the weight gain, but that it’s GOOD that I have some extra weight. People who are a bit overweight tend to last longer, she said. And I’ve already got a slow progression going for me, so….keep that up.
So not only doctor permission to not lose weight, but an active advisement AGAINST it.
Now’s the time you kinda wish you were me.
We talked about familial ALS versus spontaneous, and she told me that there’s increasing evidence that a larger portion of ALS patients have familial ALS than the 10% everyone thought. There is a lot of research being done towards this, and that’s also where a lot of clinical trials are. Our next step is to get approval from my insurance company to get the genetic test that will show if I’ve got those markers or not, and thus make me a good candidate to participate in all the exciting things going on. I don’t think my insurance will turn it down.
We’re also going to start me on Riluzole. Because taking 8 pills a day wasn’t enough. But also mostly to see how well I tolerate it. Because it’s known to do SOMETHING, and if it’s not going to hurt me, then why the hell not. We did some baseline blood work today to measure against potential liver damage down the road, and we’ll see if I get nasty side effects that make the potential extra 6 months not worth it. I don’t wanna have 6 more months of feeding tubes and ventilators if I spend my whole life up to that point feeling nauseous.
ALSO I have an appointment in 3 months to attend an ALS clinic. Mostly to get a feel for how they work, and also baselining and meeting all of the key players in the medical soap opera that is becoming my life. That will be in August. I’m really curious about it.
I forgot to talk to her, but emailed later and discussed that way, about anxiety. I don’t want to be on a maintenance drug for it. At all. Most of the time I’m handling everything just fine. But there are some nights I need a little hand. Usually when I’m trying to think about something really important that I NEED to be thinking about. Like advance directive. I’ll sit and think about it and my brain suddenly goes all staticky and KRRRRSSSSSSSSSSSSSSSSSSSSH and then I either have a panic attack or my mind goes OMG KITTENS AND STICKERS AND SUNSHINE YAY and thinks about literally ANYTHING ELSE. So I told her it’d be nice to have a hand with that, sometimes. She suggested ativan, which I’m leery of because it can be habit forming and makes you sleepy more than just calm.
And then she said, “Medical marijuana can certainly help with anxiety and there are many non-smoking forms of it if you wanted to try that.”
..I have a lot of complicated feelings about pot. Mostly negative. I’ll be posting about that allllllll on its own. I’d be lying if I said I hadn’t thought about it, though – I’d actually mentioned it offhand before to her because I’d thought about giving it a shot for my chronic headaches, before. But yeah. I need to figure some things out. In the meantime, I have a few ativan prescribed to me. I don’t have work tomorrow, and no appointment until 1PM, so I’ll probably take one tonight and see if I can work on advance directive stuff.
So that’s where we are at with the stuff. Tomorrow is my followup physical therapy/orthotic appointment to see how I’ve been dealing with the braces (awesomely). And now you are up to date.