Posted 11/17/2009 1:35 PM (GMT -6)
I joined the forum today, My name is Rick, 50 yr. old, diagnosed 5 years ago. My first neurologist overmedicated me, started me on high doses of sinemet, then stalevo (the highest dose with pills the size of a marble). I changed docs, found a good one at Cleveland Clinic Florida. She put me on a low dose, 25/100 5 times daily. It worked well for 2 years, less side effects, but I hit a wall a few weeks back and am seeing her tomorrow to tweak or increase meds. I am often sore and stiff doing simple things. My walking is terrible unless I am 'on'. My right side is affected, but now my left arm & hand is losing mobility and dexterity. It is scary because I depend on it so much for everyday tasks.
I have tried Azilect, Comptan with Sinemet, Requip, Stalevo and nothing except the Sinemet (Carbidopa Levo) has any positive effect for me. I may have to go to the blue pills or take more of the yellow pills (25/100) I am on.
If anyone experiences severe cramping in the ankle/thigh area, I would recommend botox shots in the area. Cleveland Clinic did it for me in 2007 and it deadens the nerves there and alleviates it. Mirapex used to put me in a coma, I was totally listless. My wife thought I was frozen or something.
Lisa, I am also thinking of DBS. It seems goulish, but it is frustrating only feeling good and functional a scant few hours a day and sore and stiff the rest of the time. A lot of success stories with DBS, but it is still new and it's hard not to be nervous about the procedure.
Good Luck to all, nice being here.