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At 17:55 11-9-98 +0000, you wrote: >On Fri 11 Sep, Martin Purchase wrote: >> Dear List Friends, >> Today is the 10th day I have been off meds, >and although I am feeling the effects, I am still surprised that things are >>not as difficult as I expected. Most problems occur on my left side, with a >>cog-wheeling effect in my knee and elbow. I can not sit too long without >>changing position, as my knees become sore. Back pain creeps up on me fro >>afternoon. My voice has become quieter and more indistinct. Handing small >>objects and trying to position them or manipulate them has become much more >>difficult. By evening I am feeling much more tired. Walking has slowed down >>and requires more effort. I go back to hospital on Wednesday to start up on >>meds again, once it is decided which option I should take. >> >> Martin Purchase (44/3) >> >> [log in to unmask] Martin, I thought I answered your mail before, but I have been confusing your mail with one of Mary Legan, who did send a mail about what is in essence the same phenomenon, i.e. having far less symptoms than she had expected when skipping doses sinemet. I do have the same experience. After not taking sinemet for two days, I too was amazed how much better my condition was than I had expected. I don't think I have experienced what life without sinemet might be, having stopped for two days only. My neuro told me it takes two drugless weeks to get back ones full PD (which he advised me rather strongly not to do). It seems to take two weeks before all dopamine that sinemet gave us has disappeared from our brains. Thinking this over, the question arises why we, after using sinemet for years, haven't experienced before, accidently, that skipping a dose has not at all a detrimental effect. The answer of this is simple: "skipping just one dose has a detrimental effect" (at least for me). This learns us something about the effects of sinemet in the short term and in the longer term. The symptoms we suffer when a dose has stopped to do its work and the next has not yet kicked in, are not necessarely just symptoms of PD, which pop up as soon as we don't take our sinemet on time, but they are effects of the leva-dopa on a lower level. When those symptoms are dyskinesia, it is clear they are not simply PD symptoms, because dyskinesia never is a symptom of PD. However when they are dystonic, this is not that clear at all. If we want to know that, a simple experiment can be done: a short drug holliday; If the dystonia is a PD symptom one would expect it increases first and after some time stabilizes, until sinemet is used again. If it is a sinemet-induced symptom, it is expected to disappear or decrease after some time, also when there is not a next sinemet. The moral that might be drawn from this story is that if we want to understand what exactly we gain and what we loose by taking sinemet(and of course we want to understand that, because it is very important to know as exactly as possible what is the cause of each of our symptoms),a (short) drug holliday is inevitable. So Martin, you having been brave enough to take a discovery trip in a for most of us unknown country. I guess the goal of this trip was to fine-tune your meds. But it might be that during this trip you discovered things about the effects of the drugs on you. Regards, Ida Kamphuis -------------------------------------------------------------- Vriendelijke Groeten / Kind regards, Ida Kamphuis mailto: [log in to unmask]