Closer to getting a baclofen/ pain pump
Well I saw my neurologist on Friday for some more botox shots.
As soon as I came in the door he was like "what on earth has happened? you look so much worse". Gee. Thanks for that. (Basically I now have almost no independent movement, can't use either arm, spine, neck or either leg, can't control my powerchair, can't feed myself and all that rubbish). We talked for a while about what's been happening and he believes the same as me, that the RSD and the dystonia are so ingrained with each other that I am in a negative cycle of muscle spasm, leading to pain, leading to more spasm, leading to more pain etc. So he has agreed with the PM dr to try the baclofen pump and see if it helps and try either morphine, clonidine, ketamine or prialt through it as well. He is going to investigate whether I can have the ketamine coma (which he'd never heard of) but he thought it sounded promising. We both agree that if something doesn't help soon or at least slow down the progression then I am likely to be very ill soon, but I really trust him to help as much as he can. I'm really scared by how fast I appear to be progressing, in six weeks things have changed so much and the pain just seems to be getting worse and worse.
It was so nice to see a doctor, well, a neurologist, who treats me as an intelligent equal human being. He was also asking how I am mentally and I said that I'm not depressed (I'm not) but I'm frustrated, angry and fed up of being in pain and not able to move - and jealous of those that can.
I spoke to him about the full body spasms I've been getting recently and he said there wasn't much I can do about them - they are going to happen. There are some meds I can try if I want but I'm not going to try them yet.
I think that was about it. I think it's positive because he has realised how ill I am (though I hate having to confront the fact that I am this ill) and I think he is going to do everything he can to help me. So fingers crossed he can help. If he could just give me the movement in my right arm and elbow back I reckon I'd be happy.
Oh, and apparently I am more than 1 in a million. So I'm special (apparently he can count the number of times he'd met people like me on one hand!)...
Loads of love