11 January 2012. (A short version of my post:
I have a double appointment with my neurologist doctor K. To make things easy I made a list of all my symptoms (what is getting worse or better), a chart of my medication v. spasms and all the questions I could think of. Because of his cryptic email in december I was really worried about certain things, so it was time for a good chat.
At 16.15 we where called in. The doctor took his time and after a couple of minutes the chaos stopped and we had a good pow wow. About my daT scan, we haven't talked any more. I already know that my scan was fine. We did talk about being off medication, how ill I did get. He explained that this kind of medication (Pramipexole or Mirapex) works a bit like cocaine (dope), it gives you a buzz and good feeling. So stopping in one go, isn't good for anyone. I also means, you need more and more of the stuff the get the same results and it can be a quite evil, mean kind of medication on your body. I had the feeling that it was working a bit less, and he confirmed that was normal. Then we talked about the side effects. My blood pressure is dropping sometimes and I'm worried about that. He told me it was a famous side effect and I only have to worry if I faint. Then I need to take less meds. Also he advised to take my pills in 4 times a day. The ritual is apparently also very important for patients according to him. He still wants me off Depakine (Depakote), but he agrees that will take time, but I have to keep trying. I also was worried about my sleeping (or not sleeping), heart rate, etc. But he told me not to worry about that. It's all in the game.
I wrote in his email about a IBZM scan. I send him an email back, but he was to busy to mail me. But apparently he thought that it would be easy to do this scan also. To make the whole view complete. But he found out I need then to be off meds again, so not a good idea to that right away. A IBZM scan is linked to parkinsonisms, and I was worried about that even tough it is very rare. But he had an other idea; Paroxysmal Dystonia dystonia-foundation.org/pag... He told me to read about it and then consider if I want to have the leading neurologist in Amsterdam have a look at it. I already met her years ago, not a big success. It is a long shot. He is convinced that I will stay a patient with an unexplained movement disorder. But the scientist in him can help it to look further and want to cancel out everything he can think about.
So a lot to think about. I will see him again in about 3 months. In the mean while, I will go on like usual. It's my life now, and I have to deal with it.