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Originally Posted by lurkingforacure
As Gomer Pile would say, surprise, surprise, surprise! Today we went to one of our neuros and I was shocked to hear him say a few things that are completely contrary to what our primary neuro has told us. Anyone have any opinion on who is right? Here are the topics:
1. Eating. One neuro told us protein completely blocks the sinemet so that you don't get it at all, the effect is the same as if you didn't even take the drug. Today neuro #2 tells us no, the protein merely delays the drug getting into the brain, but it does get in there. What is your take on this? We feel neuro #1 is correct-if we eat any protein during the day, the whole day is pretty much shot.
2. Vision. Neuro #1 told us our vision problems were cause by the lack of the eyes to converge like they used to, due to low dopamine. Clearly PD related. Today neuro #2 says nope, it's just fatigue. Has nothing to do with the PD. His advice? Close the eyes and rest them for a bit. OK-dokey.
3. Pain. Another eye-popper. All the back and neck pain we have? Neuro #1says its the PD: neuro #2 is telling us we have bad posture and need to do stretching exercises, it's not PD related at all. What the $#!
4. My favorite contradiction of the day (and it's not even lunchtime!): med dosing. We were trying to split med doses up so that we were taking them hourly, to minimize the peaks between sinemet dosages and the sleepiness side effect of Mirapex. Neuro #1 says great, that's the best/"optimal" way to take the drugs if you can stick with that schedule, because it is an even distribution of the meds (as even as we can get without a pump or patch). So he is pleased.
Problem is, hourly med schedules are damn near impossible to stick with. We have had to switch to a two hour schedule, which we discussed with Neuro #2 today...his comment: there's no real difference or need to take the meds on an hourly basis as opposed to every two hours, no difference at all. What? Does anyone here have any experience that would indicate better symptomatic relief on a one versus two hour schedule?
These two guys are the top in our metropolitan area, so they are not hacks. Anyone have any thoughts on who is right?
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Maybe they both are, sometimes. I've been taking carbidopa/levidopa in homemade liquid form for almost 3 years. I started with an hourly dose, (I keep track of my dosing in a small notebook so I don't have to rely on remembering when I took my last dose. I also use a kitchen timer sometimes to remind me because I tend to forget to take doses if things are working ok). As time and the parkinson's has progressed, I've been spending more time lately tweaking my doses. Especially on those days when nothing works when or as it should. Then I listen to my body (mostly the screaming dystonia in my feet and back) and take an extra dose or more as needed.
I was initially dx'ed 12 years ago at 39yo.