I knew nothing about l-dopa at all when I was diagnosed 8+ years ago. I was prescribed a low dose straightaway as a challenge. I have never been on any other PD drug except entacapone (comtess, comptan). I was not told anything about sinemet, or about PD, though I learned fast enough on my own.

When I went back after 2 weeks and told my neuro that his medicine had worked I was initially prescribed 3 x 100/25 per day but it always wore off noticeably. I was then prescribed 200/50 CR at night to help with the wearing off. It did help but made me very forgetful and unmotivated. Also had a lot of weird dreams, so on discussion the dose was changed to 100/25 plus 100/25CR three times a day instead. A different neuro told me never take sinemet at night.

(I only once increased from this - I was in France working an 18 hour day, and added an extra dose for a few weeks. Returned to the UK and stopped the extra immediately, not knowing any better. It was bad, and I had about 2-3 months of real struggle. It was a big price to pay. I had all my original symptoms and more, I could hardly move, was unable to hold a thought for long, and my numerical ability disappeared and has never really recovered fully)

I then stayed on the original regime until 3 years ago when wearing off started to become a big problem and I was not really getting good on time. My PD nurse specialist reckoned that I was rather under medicated, and she watched me wear off when she visited with me. She arranged for my neuro to prescribe entacapone which I now take with my sinemet.

By the time she visited next I had stabilized with the new addition and it was clear that a lot more dopa was getting to where it was needed, so I had reduced my intake to 4 1/2 tabs a day (with a little advice from people here on the forum), and was better than I had been before. I am now on 5 or 5 1/2 depending on what I do. I am fairly stable and in the mornings get around 20-30 minutes where I am not too bad before I need meds.

I have had dystonia since before going on medication, and have peak and end of dose extra movements that only really started this year, and do not happen unless I am walking. I haven't got a name for these, they are just odd movements that are only a bit uncomfortable. I keep telling myself they are not dyskinesia, as I don't want that to happen. I have quite a bit of hesitation too, that does not seem to have a pattern to it. Occasionally I have a sudden move on, like at bunny with new batteries, except its all fast steps instead of big jumps. I guess this is festination. No pattern there either.

I feel lucky that I have not had a lot of problems with sinemet. I also feel very lucky not to have been on agonists, or on a combination of meds.

The difference between me on sinemet and not on sinemet is huge. It is also very noticeable if I run out of entacapone. Since adding it has become less crucial for me to be really strict with timing, and I can let things slip by anything up to an hour before needing my next dose.

Just recently I have noticed that trying to turn in bed is getting as bad as it was before going on medication. My cat loves to sleep on me, and that does not help. In fact she feels like a large travel bag, and first thing in the morning it is getting difficult to move. Once I am upright it is only bad going down the stairs. If I take a little sinemet this is better - but I lose a few hours of sleep.... no easy choice if you never get more than 5-6 anyway.

I had symptoms for around 7-8 years prior to diagnosis and was extremely slow and stiff at that point, with a lot of pain, bladder issues, and waking up almost incapable of movement. I had been tested for everything under the sun. Overall I am better than I was then, but have become less focused, and a lot less able to multi-task. I have a lot less energy and get fatigued very easily. My sleep patterns are dreadful which is why I am writing this now (probably why it is so long )

I guess sinemet has worked for me. Or to be more precise it has helped with rigidity, balance and slowness. Not with the other things. And there are things that would not be there if not for medication. It never did do that amazing speeding up thing that you see in videos, with huge long strides..... it has only ever been an 80% med. And it has had me worried at times. But nothing like Paula and DoGma's experiences.....

The biggest problems are the inconsistency, and the constancy of wearing on and off, and sometimes the dose failure.

I am not sorry that I started on sinemet when I did, though if I had known more about it I might have run a mile. (well, a very slow mile) I always hated taking pills of any kind, a painkiller for a head ache or tooth ache was as far as I let pharma get to me.... But it allowed me a few more years working that I would not have had otherwise, and a little time to prepare myself for not being able to continue in the job I loved. In the end the thing that made that impossible was not a motor symptom at all, but the loss of being able to multitask, something I was once very good at.

As a complete aside, from early this year I was not feeling great, had a lot of pain in my legs and developed a nasty and rather large lesion on my leg. It felt as though I was progressing, if you can call it that, downhill. After a lot of to-ing and fro-ing from a number of inept doctors at my practice, a lost letter of referral, and 3 months where I felt very bad, I finally managed to get an appointment with my all time favourite doctor who decided I probably had psoriasis and some kind of systemic infection. So, several days later on antibiotics and steroid treatment I am now feeling a lot better. Both legs have stopped giving me problems (?) and I have more energy than I have had for quite a while........and even the PD seems somewhat better..... I have had this happen a few times before, and believe that in some way my PD is inflammatory, and that antibiotics, and anti inflammatory things help. But like I say I hate meds, and do not know whether I would take such drugs in addition to the ones I am already taking......