Hi Boann,
You raise some interesting questions - reading the replies so far Paula and MikeTTF's are almost exactly what I would say. I have just got back from being taken off Sinemet for 4 days (not fun, but very educational), and am in the peculiar position of still after nearly four years being sent home with a 'possible PD' dx! Mainly I think because I have bilateral symptoms and a negative dat-scan. (I was told that 2-3% do not whow up on such scans).

I have only ever been offered sinemet, and have taken it since March 2003, which seems a long time ago now. I have a developing tremor which is mainly visible to others, but I don't bother about too much - rigidity and bradykinesia take up too much time! And bradyphrenia too, which gets talked about less. Your description of 'like being out in the cold' etc, desribes exactly how I was before sinemet, especially in the dreaded supermarket queue, fumbling for coins and notes. (Plastic is a godsend!)

I am currently having to fight my corner to be recognized as being dopamine responsive - I have been seen this week by five doctors who have never seen me before, and only seen me off sinemet, who avow that they see no "objective" difference when sinemet is withdrawn! I had to to say to them, Well, I can ------ well feel it!

I am very interested that you have no rigidity - or do not see rigidity in yourself - PD seems to have so many variations, even the cardinal signs are experienced differently.

I have to say I was not informed at all about levodopa, just given it, and have had to find out about it for myself. I was never offered anything else,
and feel as though I have been on a very extended sinemet trial. I am not sure about neurotoxicity - it is probable that this will be true for some but not for others, as the disease is so variable.You are right that not everyone is given information about the drugs they are given - if I had know about the different drugs available I probably would have opted for either no drugs just yet, or to try an agonist. This was not offered or up for discussion, because nobody can decide whether or not I have PD!

made it up's 'blissfully normal' also describes how I felt, both when I initially took it, and yesterday evening, when my blessed first dose kicked in, and the very small little girl voice that I have suffered with all week normalised, and I was able to sit down without having to think about it for ages. Walking will I think take a little longer to get back to where I was. I shan't even describe my antics trying to lie down on a hospital bed without sinemet or someones help - they defy description!

Sinemet has enabled me to keep some independence, something I value greatly. All my doctors this week have kept talking about 'dangerous side effects' and better if I take something else. Do they know something we don't know? Or is this just the current line that is getting taught to younger doctors? I would think that dyskinesias are debilitating, but not dangerous (??), it seems that many would rather have them than the man features of PD, or at least find that it is not a matter of choice.......

What I have learned from forums like these is that it is important to keep the levels of sinemet very even, and to keep the dose as low as you can, and there were on the old forums, many posts that showed that the 'five good years' on sinemet can actually sometimes be a very much longer period. On the other hand there were also many people who experienced side effects even earlier...........

Take care
Lindy