how does your dr. feel about trying an agonist? what you need to ask in addition to sinemet questions is if anyone saw improvement after adding an agonist to sinemet.
doesn't sound like you've exhausted all options on conventional and alternative treatments.
can't advise you on alternatives.

after 6-7 years i get an adequate/predictable response to l-dopa, every 3 hrs in the form of 100mgIR/200mgCR, sometimes more or less depending on how i feel and what i want to do the next few hrs. with me it's like filling up the l-dopa tank still. protein has a major affect so really have to time my meals. always need to take more l-dopa in the afternoon for some reason.

i certainly don't feel normal, can't play team sports and still have some fatigue. i was initially prescribed mirapex, made me sleepy so decided to go with sinemet and have avoided trying the newer extended release agonists.

More on DaT / levodopa response...
 

DaTSCAN is not diagnostic. It cannot differentiate PD from other atypical parkinsonisms (PSP, MSA, etc.), so it has only been used as a supportive criterion along with a clinical exam, especially in younger patients.

DaTSCAN is sometime used to differentiate other forms of tremor from tremor-dominant PD, especially if they don’t respond to levodopa. In general, if a patient does not respond to levodopa (up to 600mg/day for at least 14 days), most likely the condition is NOT Parkinson’s and diagnosis might need to be reconsidered.

Hope this is helpful.

Debi

Hope you noticed the link I gave to your website.

Another indicator to consider
 

Another very inexpensive test to consider is UPSIT -- the University of Pennsylvania Smell Identification Test. It is NOT definitive. But might contribute to a diagnosis. Insurance covered mine for a $5 copay.

Many, but not all PWP's have significantly reduced abilities to smell strong odors.

A search of PubMed will give you the details of how this test is used.

Some studies have concluded that patients with autopsy proven atypical parkinson's ability to smell was not AS IMPAIRED as PWP's.

The nuerologist I first visited initially put me on Mirapex and I was on it for about three months. It really did nothing for me except make eat all the time, weird. After my symptoms caused me to have a bad accident at work, I used to operate heavy machinery, he took me off it and then prescribed sinemet which made symptoms better at first, but as I said over the past 15 months symptoms kept coming back sooner and sooner between doses. Debi you are right, at least in my case, I have found timing my meals does make a big difference and I am very strict about that. That's interesting about smell issues, I smell things fine. I am glad for your responses I am learning a lot, I need to ask my MDS some questions, maybe ask to have some of these tests done. Thank you

Response to levodopa/carbo
 

My dad is diagnosed with either Parkinson's with dementia or multiple system atrophy. I kept asking him if the levodopa was helping and he says I don't know how can I tell? I went through a list of things asking is it helping with moving etc. the only thing he did say that he noticed help with was that he felt a little better inside his brain. He has dementia real bad now so I just don't think he can tell. Do you guys have pain? It worries me he is in pain. I ask and he says stop asking me I am not in pain I would tell you. Then a few hours later he is holding his back or leg saying they hurt. Hope this helps.