Jim,
Your post sounds like I could've wrote it.
I still miss a Sinemet dose every so often and have to suffer the shuffling death of bradykinesia.
Any amount of Sinemet brings with it "ballistic" Dyskinesia (my MDS's term)
Any protien in my stomach blocks the Sinemet - a 3 hour wait w/ Bradykinesia.
Programmer can't seem to find the "right" settings w/Sinemet. Found an excellent settings w/o Sinemet, but they won't allow it because of a risk for NMS.
$110K holes in my head and he won't set me up w/o Sinemet!!??
In 3 weeks I'm going in for a CAT scan (MRI is better for this? Jaye -Chasmo?) to check lead locations.
Advice for you? I carry around a folded up piece of paper with my chicken scratch handwriting for my next dose of Sinemet. (I'm on every 90 minutes)
Dump the smart alec MDS. You must have the best you can get - and liking him/her personally I find to be very important.
Mike
Quote:
Originally Posted by Jim0918
It's hard enough even with the use of a timer, the alarm on my cell phone, etc to stick to a very timely schedule with your meds.. I can be off whether it be first thing in the morning or especially if I am late with a dose. I then take my meds which in my case I get results in about 30 mins. ( I try to take my meds on an empty stomach or else at least an hour from my mealtimes. But on occasion that 30 or even 45 mins go by and I still don't feel relief. I then take another half tablet and within 5-10 mins I am on, soon to be followed by bouncing off walls and head bobbing with dyskinesia. Then I try and wait it out not knowing when I should take another dose, how much to take, you get it. I know that the biggest part here is the regular timing of the dosage. I am never much more than 20 mins or so if I am late, if ever. most of the time I am right on but at times it happens. ie. I shut off the alarm thinking to take a pill and get sidetracked. I am at a loss as to what to do. I have had DBS. I cannot get the dosage down from PRIOR to my DBS that being 2 tablets of 25/100 every three hours and am now being seen by a third neurologist who seems to think that I have psychosomatic PD, WTF?? Any suggestions, I am open to anything, heck I've already been told by this guy that my PD symptoms are in my mind. Can you believe this? This is a great gig I've got goin' here, cant pay your bills, can't drive, get to take all these meds, been to the ER or in the hospital more this year than I ever have in my life. Not to mention the stress on my marriage, loss of my career, I could go on and on but you guys know what I'm talking about. I just want a little break. Tommorrow is another day that is centered on what time did I take my meds, when is the next one due, how am I doing-too little/too much. Hell, I can't count on being able to walk the damn dog I get so bad that I am about to fall due to being too off and my feet are shuffling or I'm bouncing all over the place. What is most depressing is that I am not getting much help here from the docs and this 3rd guy is a MDS!! At the end of my rope. Anyway thanks.  |