Tremor update

Yeah, no this has nothing to do with road trips! I plan to post here about our trip to England, Scotland and Ireland too later and I guess it is a stretch to call that a road trip either. So much for my sticking to the theme...

First off, I should update by saying that about a week after stopping carbidopa/levodopa that the left leg kicking had stopped. So, that was good news. Clearly, it was a side effect of the drug and not a progression of my disease. It wasn't as bad as the first drug, generic Mirapex or Pramipexole. That one made me exhausted, headachy, gave me extreme sweats, visual hallucinations of fire at night and dangerously constipated. It did though the most to relax my right toes. Dr. Carnes pulled the plug on that one though.

I saw Dr. Carnes on 3/11 and he prescribed Ropinirole or generic Requip as the next drug to try. He said he has dozens more! I am not sure I am up for all that! I stopped taking Ropinirole today with permission from Dr. Carnes' nurse. I had been taking it for just over 3 weeks. It made me really tired at first, but the Pramipexole did too at first. So, I just kept taking it and by the middle of week 2 I had muscle burning. I felt like if you've been running and your leg muscles start to burn and you cannot get enough oxygen to them. Except this was all over my body, literally every muscle in my body, not just the muscles affected by the tremor but my entire body. By this week, I started thinking I was going to die from this. I mean I could not exercise for 3 weeks. I could barely get up the stairs or through the house, etc. Clearly, this wasn't going to be a long term solution and like the other drugs Ropinirole wasn't reducing the tremor.

I will go drug free at least until my next appointment on 4/23. Until then I have to say that the knitting I have taken up stops the hand tremor. I just wish something could stop my right foot from fisting under. It is the most painful part of the symptoms. Dr. Carnes' nurse today asked if I'd like to be referred to a movement specialist. I declined. Unless there is some holding still specialist... Anyway, she said I should be journaling to keep up with my medications and reactions and symptoms. I have loosely done that here and I will continue. I can use any good wishes. Thanks.